Alysia's Amazing Strength

Surgery tomorrow (2/14) at 2pm

2012-02-13T21:23:00.001-07:00

I tell you, no consistent info.... Alysia's regular surgeon was in today and he wants to take her tomorrow and will put in the broviac. He will also do one of two things - do the revision of the gastrostomy stoma so she can have a new gastrostomy button, or close the gastrostomy stoma so that it has a better chance of healing. We have no clue which will happen - GI doc thinks they will have to close it and wait to put in a new gastrostomy stoma in a different location. Either way we have no idea what this will mean for hospital stay as there is a lot that will still have to be accomplished to get her home.

Fingers crossed for the revision as I think that is our best bet for her.

Another 1 - 2 weeks

2012-02-12T21:16:00.001-07:00

We had a very rough start to the day. It started with x-ray being done and MeeMee having to stand up to the x-ray techs as they refused to call Alysia's nurse so that she could assist so Alysia wouldn't be hurt again. The x-ray showed that the suction tube was lower - still in the stomach but lower then before. They moved it up about 1 1/2 inches and the difference was amazing. She isn't leaking from around the stoma and they are getting about 3x out of the suction tube than she got yesterday. This was all done before 7am - not the best start....

9am she had to have her morning oral meds that make her feel awful - pain, nausea and she was not up for that today. Poor thing was so upset.

The surgeon that was on this weekend (and has seen Alysia several times regarding this issue) came to see how things are going. She was surprised the difference the repositioning made but was happy it was doing better. She showed us a different way she wanted the dressing done. Unfortunately she also had to let us know that we will likely be looking at another 1 - 2 weeks before they will be able to do the surgery that will get her home. Talk about devastated! Both of us!!!

Alysia asked to talk with the ped doc because she couldn't continue going on like this. LOVE our ped doc!! She sat with Alysia and reminded her that the surgeons will give worst case scenario, she reminded Alysia all the things that were going to be done (different dressing, x-ray immediately if she starts leaking again, continued pain and nausea control). Alysia wasn't happy but she settled a little. It took hours to get her to a place she could relax a bit. She is scared to hear what her regular surgeon says tomorrow.

She is requiring blow-by oxygen now. The pain is just going on too long so she isn't breathing deep enough, plus all the meds she is requiring right now don't help. So far her lungs sound fine.

Tonight should be calm and hopefully the surgeon can give her some kind of time line; even if it's not the one she wants to hear.

Small step backwards

2012-02-11T20:56:00.001-07:00

Today was a bit rough. Alysia is hurting more, having more nausea, and draining form the stoma more and more as the day went on.

Just before 6pm she had a complete meltdown we had just changed her dressing and her skin is once again bleeding - she was hurting, frustrated, and scared they won't ever get to do the surgery. The nice thing was that the ped doc (whom Alysia loves) came in just as the melt down was starting so she got to see just what has been happening. Tomorrow they will likely do an x-ray to check the placement of the suction tube to see if it has moved and is no longer able to suction as well as it was 2 days ago. Alysia became very upset about this as the x-rays hurt her back to lay on the film (scoliosis and fusions don't mix well with laying on hard items or tables). Needless to say the doc found Alysia's nurse (who was wonderful all day) and asked her to give her more pain medicine.

When I left Alysia was calmer (watching Breaking Dawn part 1), we had a plan in place for when they come to do the x-ray, and her nurse had just given her some Adivan. Last night she got very little sleep due to pain and those darn machines....hopefully tonight will be better as I don't think she can deal for another day with no sleep.

Darn Nausea

2012-02-10T21:03:00.000-07:00

Not a lot to talk about tonight. For some reason her body seems to be making more stomach acid/gunk than it has been and this afternoon she had major nausea followed by extra draining from the stoma (even with suction going) and eventually some additional skin breakdown and severe pain...nobody is sure what that is about but I hope it calms back down over the night.

It was nice only having to deal with clamping the suction for meds once but it's a rough time. It takes 3 - 4 hours to get thing back under "tolerable" conditions after. GI said this just goes further to prove she is having motility issues and the need to get her seen by the motility clinic. They added a 3rd anti-nausea today to try and keep things under better control and give more options to keep her comfortable.

Things are on hold until at least Monday

2012-02-09T21:22:00.000-07:00

Today Alysia saw her surgeon and he wants to keep the gastric suction going until at least Monday and then he will evaluate where things are.

Alysia got to see the Psych doc there and that helped. They don't really talk much but she reassures Alysia that she has a right to feel the way she is and that it's not fair she is having to deal with it but there is an end in site...

Her ped doc and nurse were able to change medications so that she will only have to take oral meds 1x/day in the morning. The issues is that every time she was having to take oral meds they had to stop the gastric suction for 45 - 60 min. During this time Alysia would be in severe pain, have tons of drainage from the stoma, and become very nauseated. This morning it took over 4 hours to get things back at a manageable level for her. This was originally happening 5 times a day, the nurse was able to get it down to 2 times a day, and then the doc was able to get down to 1 time a day.

Alysia is of course frustrated and angry but given all that is going on she is being a good sport. She isn't complaining about the tube in her nose; she is complaining about how bad she feels and that her gowns keep getting wet.

Hopefully tonight will be calm.

Better day for Alysia and the rest of us

2012-02-08T21:22:00.001-07:00

Today was a better day. The gastric suctioning is helping a lot. Alysia's skin around the stoma is looking much better and the stoma has already stopped bleeding. As long as the suction is on she isn't really draining from the stoma, however the suction has to be stopped several times a day for her to take medication. At these times she leaks from the stoma, pain increases, and nausea gets pretty bad. Today they worked on grouping as many medications as possible to keep her on the suction as much as they can. Most of her anxiety today was due to these times.

Today she started having trouble swallowing the yogurt with her meds in it and it seemed to make her worse so tonight they will try dissolving the medicine in water for her to take that way to see if it's any easier on her stomach and throat. She is have a lot of pain in her throat and the left ear is getting sharp pains, we think it all has to do with the suction tube.

The surgeons were by today and said to keep her on the suction as that is going to be the best way to get the stoma and the tract to help up the fastest. Apparently the internal tract of the site is in pretty bad condition and not only will her skin and stoma site have to heal but the inside will have to as well before they can attempt a revision. They think while this all heals the stoma will start to close on it's own and that will make the revision easier. If it completely closes or if it won't heal correctly they will have to make a whole new stoma.

We know we will be there through the weekend and some of next week (maybe the whole 10 - 14 days he wants before even trying to do the revision). They are taking it day by day.

Again thanks for all the support and encouragement. We spend lots of time talking about our family and friends that are out there cheering her on to help get through some of the harder times of the day.

Not a very successful day

2012-02-08T00:15:00.001-07:00

I just got home so here is the scoop:

Today Alysia wasn't able to get the broviac as the surgeon tried a total of 22 times (yes, I counted the poke holes on her chest) to get the catheter to thread without success. They still have the Picc line in which is good but she was VERY heart broken when she woke up to find it still there. They did a chest x-ray to make sure there wasn't anything going on to prohibit the insertion but it all came back fine. Just a bit ago they completed an ultrasound of the chest and neck to help map out where to try another insertion at a later date. My poor girl is going to have some nasty bruises on her chest.

They also weren't able to do the revision of the Gastrostomy Stoma because it was in too bad of shape (DUH!!!, told him it's much better then it was just 2 days ago). They removed the Foley catheter as it's just causing more damage to the stoma site, however she not just has a large whole where all the stomach acid leaks out. She has been in severe pain ever since and nobody was able to find a way to control the draining. They contacted the surgeons again and they had them set up a suction tube to help keep majority of the stomach acid from leaking onto her skin. Just since the catheter was removed her skin is back to bleeding and it looks like it did just 2 days ago (when she went down it was irritated but the open wound was closing and there was no more bleeding). You can check out this site to get a bit more info: http://www.nlm.nih.gov/medlineplus/ency/article/003882.htm
Tomorrow someone from the office will come look at the stoma and see what we are going to do so that her skin can heal and hopefully she can come home for a bit. They will have to either do a revision or do a whole new Gastrostomy Stoma in 10 - 14 days.

Hopefully with the suction done it will relieve some of the severe pain and they will be able to keep her comfortable and able to sleep. When I left she had already been given her normal meds, Fentenyl, Morphine, Versed, and Adavan. Her pain level is reduced but her vitals show she is still in pain so they will be watching her closely tonight.

I'm exhausted so I am going to go get a few hours sleep before I have to be back at the hospital.

Thanks

Surgery Tuesday 2pm

2012-02-06T21:58:00.001-07:00

So, before I can tell you about Alysia's day I must explain about last night. You already got the idea that yesterday sucked!! Just like the weekend had and last night it all came to a head. I ended up going back down to the hospital about 12:30am and having about a 40min conversation with the night ped doc about how nothing more should be expected of my daughter until they all got their information straight, gave correct information, and had follow through. Alysia was in pain - severe pain and having a discussion that she is relying on pain meds too much was not an appropriate conversation at 11pm. That Alysia would not be getting up and walking around the halls until someone got better care for her gastrostomy button so that she isn't leaking stomach acid on an open sore when she is sitting up or walking. We made many circles around the same things until I corrected the information as she was writing her notes to pass on to the day doctor. It was awful!! I was a complete mess and wasn't convinced I made a difference but I did know I made a point.

So, today I wasn't sure how things would go especially since Alysia didn't have much sleep AND I was running on about 3 hours sleep. Luckily we had a great team of people that worked with us today. Me showing up at 12:30am made a huge impact as everyone on day shift (even those not working with us) knew what happened. The head pediatric doctor (whom we work great with) came in first thing today and talked with Alysia about how sorry she was that the plan that was firmly in place when she left last week had not been followed through. She told Alysia she would be contacting surgeons and getting a plan. She assured Alysia that she would get pain medicine when she needs it as Alysia was not abusing it, she assured Alysia she would not be expected to get up and walk the halls unless she wanted to. Alysia talked to her about her worry that she would get another fever and have to cancel the surgery again - she was assured that all her tests, lab work and temperature the past 4 days has shown that whatever was going on is gone and she couldn't look healthier. OMG!!! the 1st sign of relief came over Alysia. Her nurse is one that works wonders with Alysia. She constantly checks in to see how Alysia is doing, if she has questions, if she has concerns....amazing difference true concern and good communication can do. Within a few hours Alysia was told that the doctor had talked directly with her surgeon, he apologized that nobody had been in contact with us over the weekend and that he has her on the schedule for the revision and a broviac placement for Tuesday at 2pm. You could actually see her whole body relax, AMAZING!!!

Not long after that one of the child life specialists came in the room to see if Alysia would like to go downstairs and have her hair and make up done along with professional pictures. She lit up!!! They stacked tons of extra gauze around her catheter and wheeled her down. This is a program called Flashes Of Hope and the director of the Denver Chapter is Betsey Holley (303-956-5375, BETSEY@BETSEYHOLLEYPHOTOGRAPHY.COM, www.FLASHESOFHOPE.ORG). It is completely free to the families. Alysia (and me) had make up done and hair spiffed up (they actually made it look like I had actually had some sleep). The they did all kinds of pictures, some with both of us but tons of just Alysia. She wasn't sure what to think at first and the photographer asked me to come over and help get some smiles...I looked at Alysia and said "It's Top Model Time". It was so cute she started tossing around poses and had a blast. After a bit I noticed she was turning a bit white and shaking so I called it a day and she was hurting pretty good by the time we got back to the room but it was SO worth it. I can't remember how long it will take to get the pictures back 3 - 6 weeks but they give us 2 8x10s, all of the 4x6 proofs and the CD with all the images taken (plus copy rights) so that we can print off all we want. Most amazing thing I have seen in ages.

After we got back to the room Alysia got to talk with the hospital child psych doc. She was wonderful and to my surprise was able to get Alysia to talk. She reaffirmed Alysia's frustration and anger about bad information and having to be so uncomfortable. She reminded her gently that it's not my fault and reminded Alysia that all her feelings of not wanting to be alive and wishing she wasn't born is part of the depression with the current situation. She was able to remind Alysia that there is an end in sight and to continue her good work on getting through all this. She really did a wonderful job with Alysia and it's not easy as Alysia doesn't open up to people very much at all.

Not too long after that the would nurse came in to see what else could be done about the stoma. Alysia wasn't happy to see her but the nurse was great with her and by the end Alysia let her show her some products that would help. She said to continue to use the strips as they are helping and making a difference, she gave her a bottle of pain free spray barrier protection to help with the skin the strips don't cover that makes the liquid bead up and not allow it to sit on the skin, she also gave Alysia special foaming soap that would take off the white barrier cream we had been using as the surgeon would try using just water and end up making Alysia's skin hurt more. She said to use that today to get the site clean and ready for tomorrow and then use the new spray to help protect the skin instead of the cream. Alysia did great with this and let her nurse help clean the site up. She continues to need the catheter open to drain and they are getting a ton of stomach acid doing this - I can't believe the amount that has been pouring over her poor skin.

Tonight things should go much better. The night doc talked to me on my way out and was happy Alysia had such a better day. She said that they will be compiling a list of primary nurses and doctors to work with Alysia so that she has consistency and better communication since she is in the hospital so much again. Guess my talk last night did make a difference.

Anyway, please send all the positive everythings you have Alysia's way so that she can have the surgery tomorrow and if all goes as planned gets to come home Wednesday. No clue what recovery at home will look like but it can't be anything as bad as the pre-surgery stuff that has been going on.

Thanks

Counting the days 'till Tuesday

2012-02-05T21:46:00.000-07:00

We are keeping Alysia on Adavan around the clock to try and help keep her calmer. We have found that venting the catheter so that the acid comes out the tube instead of the stomach acid draining around the catheter and onto the skin is helping.

She is still in a lot of pain and struggling mentally with trying to deal with it all. She is very angry and is scared that the surgery will be cancelled again on Tuesday (she should have surgery Tuesday afternoon).

Thanks for all the encouragement and support. It helps all of us a lot!

Still no G-Button

2012-02-04T21:05:00.001-07:00

Crappy Day!

Still no G-Button and nobody seems to know when it will get here or where the nurses yesterday ordered it from.

Looking at Surgery Tuesday for revision and hopefully a broviac. No idea what time and won't know until they talk to the surgeons office Monday.

They put her on Tylenol around the clock and she is still needing Fentenal every few hours.

They are increasing the amount of Adavan she is getting for the 3rd time and she is getting the Adavan about every 4 hours. Alysia is very frustrated and scared she will have to be in this much pain until surgery.

Sorry this is so short but I'm exhausted and am going to crash very soon.

Thanks for everything

No Blood Infection! (so far)

2012-02-03T21:32:00.001-07:00

Rough day today. Alysia is getting Fentenal about every 2 hours and IV Tylenol about every 4 hours. Today they did consult with the wound nurse and she suggested this stuff called Aquacel that kinda traps and eats up any drainage and bacteria on the skin. Hopefully this will help the stoma heal and help with some of the pain.
(check it out at: http://www.convatec.com/en/cvtus-productsus/cvt-products/0/proddett/0/399/2316/aquacel-ag-hydrofiber-wound-dressing-with-lonic-si.html?franchise=364&proddett=2316&prodfamily=365#) to help deal with the skin and drainage issues.

The G-button they sent today was still the wrong kind and not something appropriate for a kid so they have special ordered the exact one she needs and we hope it will come tomorrow.

They have had to give her some Adavan today as her anxiety is starting to climb. Concerned she will have to hurt like this always, that she will continue to have draining issues and burns, that they won't get the G-button in, that she won't get to have her surgery....

infectious disease doc is 99.9 % sure she doesn't have any kind of infection. She has give approval to get a new broviac placed when they do the revision of the stoma. She gave permission to release Alysia from the hospital once G-button issues are cleared up or manageable.

Surgeon is out of town until Tuesday. They said that if we can get a G-button in her, get the stoma looking better, and get the pain under control that Alysia can go home and schedule the surgery for next week.

Hopefully tomorrow will be better

nothing goes as planned

2012-02-02T21:20:00.000-07:00

Today Alysia was going to have a revision of her gastrostomy stoma that she originally got the night she was born. She requires the revision because her current stoma has dilated/stretched to a size that it can no longer hold her Gastrostomy button required for giving oral medications and when able for feedings.

***A stoma is an artificial opening to or from the intestine (which is also known as the gut or bowel) on the abdominal wall usually created by a surgeon. Occasionally, it is an artificial opening in the urinary tract, called a urostomy. Gastrostomy is an opening from the skin directly into the stomach, to allow feeding.)

Unfortunately Alysia spiked a fever 101.1 in pre-op so all was canceled. Now, please remember that Alysia has been is extreme pain since Tuesday and that pain increases with movement. This temperature was taken after walking from the garage into the hospital, down several halls, and checked weight and height. Alysia was in bad shape. Now, it's still a high temperature for pain and exertion to be blamed but it's interesting to know that since then she has not had a fever and has had no medication for fevers.

We had a hard time getting admitted as the beds are all full and they have actually opened a 2nd floor for the pediatric unit to use. We finally did get actually admitted about 2:30 this afternoon (we reported to the hospital at 8am). So far all looks fine - lab work is normal, chest x-ray is fine, no flu....we are waiting to hear on the blood culture and urine culture.

The bigger problem is finding a temporary fix for the G-button issue. Alysia continues to be in severe pain and continues to have burning around her gastrostomy stoma from the stomach acid that is leaking around the foley catheter that is currently keeping the gastrostomy stoma open. They are giving her Fentenal every 2 hours in addition to her normal pain meds and that still isn't keeping the pain under control. They did finally get permission from the surgeon to put in a temporary button IF they can locate one that would be appropriate. So far they have not had any luck. The one they found that was big enough around to stay in was 3x too long for her. They have messages out to several people trying to find what they need. For now we continue to change her dressing and keep her as comfortable as possible.

Needless to say her anxiety is up and she continues to repeat that "she can't live this way". Hopefully tomorrow we will have preliminary results on the remaining test that they did, find a temporary button for Alysia to use, and get her scheduled again for the revision.

Thanks for the encouragement and support we are getting, it means a lot

Alysia will have surgery Thursday

2012-01-31T15:19:00.000-07:00

We are finally home from the surgeon's office. Crazy and painful day for Alysia. My girl is so amazing and strong. We were able to finally figure out a way to at least slow down the leaking and hopefully keep more of the medicines in her for the time being. Alysia's stoma is to large even for the 24 french button (but wouldn't matter as nobody has one in stock and they couldn't get it to us until Thursday anyway). We have to leave the foley catheter in until Thursday but we created better support for it so that hopefully the skin can heal a little or at least not get worse.

Thursday morning we will check in at 8am and her surgeon will do a revision of her gastrostomy stoma. They will use the hole that is already there (Thank goodness) and will basically tuck in some of the lining that has surfaced, reduce the size of the stoma, and she will have a much healthier site once it all heals up. They are planning on her staying the night at the hospital just because it's Alysia and we never know what her body is going to do.

Alysia was back at the ER this evening

2012-01-30T20:39:00.003-07:00

Well OF COURSE we can't go even a week without a trip to the hospital these days. This afternoon Alysia's gastrostomy button came out with the full retention balloon in tact (see attached picture) . It appears that the GI doctor was right when he said that the stoma was getting too large to hold the button in place. I spent several hours on the phone with the surgeon's office and we finally ended up going to the ER because I couldn't get it to stop leaking or the pain to subside. Alysia typically requires a G-button (18 french) but the ER finally found a foley catheter (24 french) (see attached picture) that help slow the leaking but not stop it and still causing pain any time she moves. They can't inflate the balloon as it would just fall out because the stoma is too large even for that so we have it taped for now. The stomach acid is burning her skin around the stoma and she is a mess.

Tomorrow we will see the surgeon so they can decide what they will do. We would like to think that they will just have a huge button that can be placed but it sounds like they may have to do a repair to the stoma. I will let you know more as we find out.

Fingers crossed for a quick fix!

Alysia is settling down now that she is home, but still waking at night thinking alarms are going off...

2012-01-25T17:50:00.001-07:00

Good visit over all with Alysia's GI doctor. We all agree nothing major will be done until after we see what happens with the motility clinic. We all agree that no more guessing especially with anything that would cause major change, stress, or pain for Alysia. ... I talked to him about the mess at the hospital and how to better handle that next time and he said that the other GI docs shouldn't be doing anything major without consulting him since he is her primary GI doc and that the easiest way for me to deal with something I am questioning is to just ask the covering doc to consult with him before talking any further. I liked this and I have talked to Alysia that we are going to start being very blunt with all the doctors, the ones we always see and the ones at the hospital, that the #1 goal is quality of life and for Alysia that is based on the ability to see a movie with her friends and to participate in dance class without being in extreme pain for days after.

They have been in touch with the motility clinic, it will take at least 3 months. They are waiting to hear back from the motility clinic in terms of the best way to get her in the fastest and if there is a waiting list we can get her on.

The only concern I have is that is the past 5 weeks she has gained 3lbs. No explanation especially since she is still on the lasix the hospital put her on.

She will see him again in 2 months (since we aren't going to be doing anything we get to go longer than normal).

Thanks

We are home

2012-01-23T16:16:00.001-07:00

We are home. All surgeries are on hold until we can be seen by motility clinic. This makes WAY more since to me as everyone is guessing what is going on and one thing we all finally agree on is that a guess is not good enough reason to do surgery. They did confirm that her GI docs are working to get her seen in the motility clinic. We see her primary GI doctor this Wednesday.

Alysia will have to be on a pump 24hrs a day for her antibiotic. This will be through about 2/1/2012. Alysia will see the infectious disease 2/2/2012 to make sure all is ok. She will also have to have blood work done to watch her White Blood Cells because they can drop with this antibiotic.

They are keeping her on the Lasix for now and we will see Alysia's primary care this Friday to talk about if she needs it long term.

For now we are going to try and get back into a routine tonight and see what the new antibiotic set up looks like.

We do want to thank everyone for all that has been done for us in so many different ways. We have amazing family and friends and we couldn't get through these days without all of your support.

How many doctors does it take to give accurate information....hoping to find that out Monday

2012-01-22T21:52:00.000-07:00

Alysia has been on room air for 35 hours!! She has had negative blood cultures since 1/19/2012 (including the 3 blood cultures done yesterday). Infectious Disease says the antibiotic she is on can be done at home and since we pulled the broviac Alysia will only have to be on the antibiotic for 2 weeks (as of 1/19/2012) instead of the original month. So, what we went to the hospital for is now under control.

However, what we didn't plan on dealing with this hospital visit is now causing us pure stress, frustration, and still no answers.
1) So the GI doc removed the stint Friday but it has given Alysia no relief.
2) The surgeon and GI doc seem to disagree on if placing a Jejunum button is appropriate. It has been an emotional roller coaster today as information changed with each visiting doctor. The pediatric doc was frustrated because once again they had to give Alysia Adavan because of the complete meltdown she had after having seen the docs and heard the different "action" plans. We left it with GI doc covering going to talk with Alysia's surgeon and Alysia's primary GI doc and get the three of them on the same page and come to us with a plan tomorrow.
3) GI doc said firmly that Alysia's stoma for her Gastric-Button was a mess and needed fixed - Alysia heard this, however surgeon took a glance and said it was fine and looked healthy...

You know, Friday crushed Alysia's heart when she was promised relief and a new tube to make her feel better didn't happen. Today her little heart has just been ripped out and she has lost all hope.

Anyway, I'm going to bed and hoping we don't have a repeat of this mess tomorrow.

Rough day and it looks like Alysia will be in the hospital at least another week

2012-01-21T22:50:00.001-07:00

Our day didn't start out so great and only got worse. Mean Mom made her take a shower because they had to change her new Picc line dressing. Thanks goodness we got the shower done before the pediatric doc come in. I honestly have tried to get over this but I'm still SO mad! It appears that Alysia spiked a fever of 101 yesterday and of 100.4 today BUT NOBODY TOLD ME!!!! Apparently the information wasn't given to the doctors either. So, the doc came in this morning upset she hadn't been told (assuming we had) and advised us of the concerns that pulling the broviac catheter didn't clear the source of the infection and that if we can't get it under control she can't have the surgery for her new Gastric Button and Jejunum Button. Today she was running in the 99s but that was with her on Advil and Tylenol.

At this point Alysia is in a panic because now they not only have to do a dressing change on her new Picc line (the 1st one always hurts because the incisions are still so fresh that the cleaning stings) but they also had to do 2 blood cultures from the new Picc line and a blood culture from her arm. She was so upset and couldn't get under control - it wasn't even a fit, it was complete fear. The pediatric doc came back in and offered a dose of Adavan which we gladly took (they will be calling her psych doc Monday to figure out how to adjust her meds while in the hospital). Alysia does great with letting them draw blood, it's that they think they can find a good vein and in reality it won't draw. They let the Adavan kick in and the nurse came in "with help". UGH!! I let them know that Alysia isn't the problem, that she holds still but her veins don't cooperate. Sure enough, Alysia was wonderful
I haven't seen the surgeon yet but it sounds like they want to do the surgery Wednesday.

Since yesterday Alysia has lost 1 kilo which has to be the fluid she was retaining that the lasix is helping get rid of. They decided that the extra fluid is likely what was keeping her on oxygen on top of the swelling she was dealing with. She has been on room air since 10:30am even with all the meltdowns that have gone on. For now they will keep her on lasix to keep the retention under control. They also agreed to take Alysia off of breathing treatments unless she starts sounding bad - this was a huge "win" for Alysia as she really struggled with them.

We still haven't gotten to see her surgeon so we don't know for sure but the pediatric doc said they are talking about doing her surgery on Wednesday. I'm really hoping he comes to see us tomorrow as I think it will help her to have a better idea what to expect and what the recovery time will look like. No doubt we will be in the hospital for at least another week.

I did have several talks with staff today about frustrations
1) no more student nurses - the teacher given the wrong info in an insensitive way about her having to get a catheter AND now the whole 101 fever that nobody was told about.
2) no more training nurses - last night Alysia didn't get to go to sleep until after 1am because the nurse learning the pumps at this hospital AND she can't deal with more exams, questions, etc that you get when there are 2 nurses..
3) they 101 temp that was reported to nobody (including me) will be further looked into and will be written up and submitted for review to find out what happened (if they tell me it was an error in notes and Alysia didn't have to go through all she did today I'm going to be even MORE pissed off)
4) Wednesday Alysia's GI doc had mentioned to her that she should request a different room so that she isn't by the noisy door. Now that she will be having surgery and staying longer she wants this to happen and she want's to be moved to a specific hallway that is much quieter. Talked to one of my favorite charge nurses and he said he would arrange it as soon as one of those kiddos gets discharged and that will likely be tomorrow.

Anyway, she should have a better tonight which hopefully will lead to a better day tomorrow.

Thank you to everyone who is doing odds and ends for us and being so understanding a supporting.

We will continue to stay in touch

They were able to remove the stint in her common bile duct

2012-01-20T22:30:00.001-07:00

It has been a very rough day so here is the basics:

They were able to remove the stint that was in her common bile duct without issue. However, it turns out that the stoma for the Gastric Button (G-Button) is so dilated that he is surprised that the balloon holding the Gastric Button in place hasn't fallen out. Needless to say Alysia was devastated that she didn't get the Gastric-Jejunon Button (GJ-Button) and that she wasn't going to have any relief. I haven't seen her this crushed in a very long time. Even after being back in her room she just couldn't manage and her anxiety was skyrocketing so they did give her a dose of Adavan to help take the edge off.

Apparently there is concern that this blood infection could have been caused by the stoma condition because of how large it is and how raw it is. He has talked with Alysia's surgeon who will be stopping by to see us this weekend. The stoma will need to be closed and a new one created for the Gastric Button. He also wants to place a Jejunon Button for feeding access to bypass the stomach instead of attempting a Gastric-Jejunon Button because her anatomy is so hard to navigate through. This will mean the surgeon would be closing the current stoma and creating 2 new stomas.

Since being in the hospital Alysia has gained 2 kilos. This is likely due to fluid retention caused by the increase in steroids she is receiving so they gave her a dose of lasix and you can already see a difference in the swelling.

That is a quick update. Hopefully we will find out a plan this weekend.

Thanks for everything everyone is offering to do for us. The support has been wonderful and very appreciated.

Broviac out and Power Picc line in

2012-01-19T22:52:00.001-07:00

Oddly enough the blood culture from 1/17 is still negative BUT the blood culture from yesterday 1/18 is positive. Alysia's broviac had to come out today going with the belief that the infections is technically out of her blood but still in the broviac catheter. You can see what a broviac looks like here: http://farm1.static.flickr.com/9/77045791_302eca6608_z.jpg
While she was under they put in a Power Picc Line in hopes that this will get rid of the blood infection all together. You can see what a Power Picc Line look like here: http://www.executivehm.com/media/article-images/article-image/EHM/issue-10/web-images/Maximus-1.jpg

Alysia is feeling really crummy today with more pain and nausea. She doesn't look good but I am hoping she will feel better now that the broviac line is out, and hope some of the pain will go away after tomorrow. You know, it's hard enough when the pediatric doc was in and had "that" look. However when one of the GI docs that has known her for over 10 year was just in and had that same look, and even commented that he was a bit concerned about how she was looking and feeling feeling worse.

Tomorrow she has the stint removed and they will attempt putting in a GJ-tube. It's set for 11am.

I'm gotta go to bed.

Thanks for everything

The blood infection may be gone but....

2012-01-18T22:21:00.001-07:00

So, the blood culture from yesterday 1/17/2012 is still negative. IF it stays negative then we will be able to leave her central line in place. IF at any point (they watch it for 5 days) it becomes positive they will have to pull the central line and put in the pic-line.

Alysia is still requiring oxygen but is down to about 1/4 liter so at least it's improvement, but on room air she stays about 87 - 88. She had another chest x-ray today. Last Friday the chest x-ray showed she likely had a viral thing going on but nothing major. Today it showed that her lungs are a bit worse and if things don't turned around she is heading toward pneumonia. She is trying (and getting frustrated) to help keep her lungs as healthy as she can - she got up and took a hot shower this morning, she went for a walk on the floor, doing her neb treatments and inhaler, and using her Volumetric Incentive Spirometer every hour. She started looking worse and feeling worse this afternoon. She is running around 99.6 but that is on Advil and Tylenol. We'll have to keep watching her to see what happens.

If she is healthy enough they plan on removing the stint and putting in the GJ-tube Friday at 11am. Fingers crossed she can do it and that it's successful. She actually asked the GI doc if he really thought he would be able to get it in...LOL!!! His face was priceless!!! He said of course and that he couldn't believe she would ask him such a question... He said that he should have better luck because he will use a camera to guide the tube, where the interventional radiologist only uses x-ray type deal to see where to go. It was very cute and the fact she asked him in front of 2 interns made it even better!!!

Anyway, the best guess (if everything goes as planned) is she will get to go home early next week.

Fingers crossed!

5 positive blood cultures

2012-01-17T22:19:00.001-07:00

We had a bit of a roller coaster day. Around 8am we were told that the blood culture from yesterday 1/16 was still negative, which was amazing news and we were going to be able to keep her central line. However, 4 hours later we were told that it turned positive. This lead to a growing concern that the bacteria has reached the heart. They did an ultrasound of the hearts and it's healthy and no sign of bacteria.

No big fevers today and really the highest her temperature got was 99.8. Of course she continues to require some Advil and Tylenol so who knows if it's masking a slight fever but at least she is no longer spiking one even while on Advil and Tylenol.

Alysia is still needing oxygen all day but still on requires 1/2 liter. We did try her on room air but she would drop to 86 - 88 on her sats and she was trying so hard to breath deeper to keep her sats up that she starting having increased pain and looking pretty bad.

GI is still planning on removing the stint in her common bile duct and attempting to place a GJ tube on Friday afternoon. IF they have to pull her central line because they can't clear the infection the hope is to do the GI stuff at the same time as removing the broviac and putting in the pic-line. Way too many IFs and Maybes for Alysia to deal with. We will be in the hospital through Friday and no clue how long after that.

However, we do have good news!!! SHE IS FINALLY OFF PRECAUTIONS and got to go walk the halls for a short bit today.

That's a run down of the day. You know things are crazy when we have been there 5 days and I haven't gotten to do any crocheting...How am I going to get things done if I can't crochet while sitting in the hospital?!?!?!?

We will touch base tomorrow

Silver Lining

2012-01-16T23:17:00.000-07:00

1st I want to thank you for all of the requests to help, all of the prayers, and all the support. It means a lot to us, there just isn't much that anyone (including me and Momma) can do right now. OK, on to the update...

YES! Some good news!! Alysia's nurse found the very favorite bestest of all times....White medical gown with Blue And Purple Stars!!!! You can't imagine the wonderful smile Alysia got when her nurse brought it in. LOVE that these things make her so happy.

Today no fever over 100 but she has required oxygen all day today but only 1/2 liter. Unfortunately on room air her sats are only 86 - 88% and on 1/2 liter we can keep her around 93%. They are going to keep her on albuteral neb treatments and she will continue to exercise with the airline machine; NO VEST!!!! I think all this will get better as soon as we are allowed to go walk the halls but unfortunately she is still on precautions.

The blood culture from yesterday is still positive. We did find out the blood infection is Staph aureus. They are changing her IV antibiotic to Oxacillin (a Penicillin-type antibiotic) that she will get every 4 hours and likely for 4 weeks. They still plan on starting the Vancomycin lock where the medication will sit in the line for a period of time to help clean it out.

The GI doc was in today, he has been just stopping in to say hi and really didn't have anything to do with this trip to the hospital but they called him in as Alysia continues to be in so much GI pain. He wants to take the stint out of her common bile duct while she is here. He talked about trying again to get a GJ tube placed (remember the last time interventional radiology tried they couldn't get it all the way due to Alysia's construction) and Alysia said that when it was in she thinks she got some relief until it started to come out so she want's him to try since he knows her insides better then the other doctor. He will likely do all this on Friday.

She is still feeling pretty crummy and easily turns pale and gets the chills. Unfortunately she feels just good enough to complain about being in the hospital. If you really look at things she is doing better. They are baby steps but at least it's steps forward and not backward like we were concerned was going to happen.

We will stay in touch as we can and thanks again for everything

Our highs and lows of the day

2012-01-15T23:18:00.000-07:00

I'm exhausted so this will be a choppy update but I figure it's better than nothing.

Alysia woke up calmer today which I am taking as a good sign. She was pretty nauseous but the IV Zofran helps with that.

The blood cultures from yesterday (arm and central line) are back showing gram positive infection. They will continue to keep her on the IV antibiotics but starting tomorrow they are also going to have the antibiotic sit in the broviac line for 1 hour to try and help clean things out a bit better. They will continue to draw blood cultures daily and any time she spikes a fever over 101 until they get a negative culture. Infectious Disease said no more peripheral blood cultures!!! THANK YOU!!!! Infectious Disease doesn't want to pull the central line yet and see if we can just get the blood infection cleared.

They are leaning t'word the urine culture being more of a contamination issue instead of another infection. Should know more tomorrow.

She is getting more gunky and congested. They think she may be fighting a viral infection as well. Still on precautions but might get to get off tomorrow. Appears that due to her pain she isn't taking deep enough breaths and her lungs are getting gunky. They decided to put her on a compression vest (a vest thwarting fill with air and then vibrates the hell out of you.) So serious pain with movement AND serious sensory issues + stupid treatment = extreme pain, nausea, and total meltdown! Luckily I am not a person that just causes issues for the heck of it so when I went to the charge nurse and explained what's up he got it all stopped within 15min. Love it when having a goose reputation pays off!

Still looking at several more days here. Ped doc is going to talk to GI and get us some answers about what's going on in the process to get her to the Cleveland Motility Clinic. Last week I found out that the ball got dropped... They are going to get home care on the same page as GI in terms of calories and weight since Alysia is feeling uncomfortable and I'm feeling caught in the middle.

Thank you for all of the emails and posts. The support, encouragement and prayers are wonderful and mean a lot to us.

My girl is feeling awful!

2012-01-14T22:18:00.000-07:00

We continued today filled with confusion and things popping up.

This morning she finally got her CT scan but the IV they got in (after 2 pokes) wouldn't flush for radiology so then ended up just putting contrast through her G-tube which is better than nothing but not as complete. I haven't heard results yet.

Biggest issue today is her fever. around noon'ish she spiked 106 so they closed the blinds in the room and took off the blanket and her socks. They gave her IV Advil and at about 1:30 the fever was down to 103. Gave her IV Tylenol and at 5pm it was down to 100. Unfortunately at 7pm it was back up to 101. They gave her more IV Advil and about 8:30 she was running about normal. She is freezing and then that makes her back, aide, a.d tummy hurt more.

At one point her blood pressure dropped a bit low but ahead recovered on her own.

She is doing better with her oxygen and seems to require about 1/2 liter when sleeping.

Anxiety and depression are taking a hit. She is already figuring out that she will likely not be allowed to have her hip infection that are scheduled for Friday. She also knows there is a huge chance she will have to be poked again tomorrow and with all they have son these past 2 day they have poked her 7 times and when they get a vein it won't draw more then 1 - 3cc before it blows.

Her blood cultures from yesterday are coming back positive (the one from her arm and the one from her central line. This means it hit the blood stream again. There is a chance that the urine culture may be growing something as well.

I think that is about it for now. We will stay in touch as much as possible.

Thank for all the support!
Janet.

Note to self...You should not be in the hospital on Friday the 13th!!!

2012-01-14T00:23:00.000-07:00

Hello

I just go home from the hospital; Momma is staying with Alysia while I get some sleep. Here is the scoop:

I got home from work around 11:15 to find Alysia still in bed. Not normal at all for her as she is out of bed 8 - 8:30. When I got her up she was a mess and running 103. Had her come out into the living room to cool off a bit and waiting about 15min and took her temp again. Yep, still 103 and starting to retch. Well, this means an automatic trip to the ER and at least 1 night in the hospital. Call the primary care and "debate" with the nurse why I have to take her to the ER.. DUH!!! Central line!!! So, she checks with the doc and yep, she has to go to the ER and should pack a back to stay at least a night.

Let me just say that Friday the 13th is not a fun place to be at the hospital. Everyone is running crazy and so communication is not the best. So, today they got chest and abdominal x-rays, they drew a peripheral blood culture (after 4 pokes and tons of fishing), checking urine culture, they drew a blood culture from her central line (after it taking a total of 4 hours of TPA to get it to work), did a nasal suction to check for Influenza, did a 2nd nasal suction to run a full panel of tests, and a nasal swab to check for rhinovirus. However, they still haven't checked her labs, done the CT scan (she was given 1/2 the GI contrast at 1:15 this afternoon), or a strep test as her throat has white spots)....UGH! They did start her on IV antibiotics Vancomycin and Rocephin,

Hopefully now that it's Saturday the 14th, things will go smoother and we can get things done to determine what's up.

I will update as I can.

Thanks
Janet

5 appointments in 5 days and Alysia (and myself) are glad to be done!

2011-12-16T21:01:00.001-07:00

Crazy time of year and a crazy week. We continue in our journey to figure out what is going on with Alysia and most importantly how to get her pain and nausea under control so that she can live the life she wants back. This week Alysia had an appointment every day and that is way more than we ever try to do in a week, but due to issues that's what happened. We have some new things we are going to try and some new issues we will try and deal with.

Monday Alysia saw her pain psych doc. LOVE HER!!!!! Alysia was able to talk about her friend Sierra that recently found out a way that may give her a lot of pain relief and more of her life back. She got to talk about how happy she is for her friend and how it makes her angry that people won't find out what's wrong with her body and fix it. She got to hear (from someone other than Mom) that it's ok to feel happy and jealous at that same time. She was also given permission to say out loud that she is angry, tired of tests, and wants her life back. Alysia left with a plan to talk to her doctors about what she is missing out on and what she wants to happen next. She left excited to start getting her project together for Sierra (can't say what it is as Sierra's parents are likely reading this.)

Tuesday we had an extra visit from our home health nurse. She is a wonderful lady but it's another appointment and a bit of an intrusion in the house. The issue that has come up or may I should say won't go away is Alysia's Triglycerides are high. Since June they would bounce up and down but they did always come back done. In October the started to go up and they haven't come down even close to normal since. The Triglycerides are running 240 - 266 with each labs done (the high end of normal is 135 - 150 depending on who you talk to.)

Wednesday Alysia saw her GI doctor and she was really nervous about this visit as she didn't want to hear "I don't know" "let's try". The appointment went fine. We found out that the biopsies she had done 12/6/2011 came back showing she has iron deposits in her colon. Yes, there is a fancy name for it and I didn't get it down when I was talking with him. When I search for it all I can find is hemochromatosis and I don't think that is what he was talking about. He said he thinks it may be due to the off and on diarrhea that she has had for the last couple of months and we still don't know what is causing that. We are adjusting one of her medications in hopes to find a happy medium so that she doesn't have diarrhea but doesn't end up with another blockage.
*He is a bit baffled by the high Triglycerides but we are going to change the amount of lipids she gets in her TPN to see if that will help. I address (again) her weight gain as there is no reason she should be gaining weight and she is now up 13lbs. Reducing the lipids will hopefully help with that but honestly nobody knows what is going on as she continues to have swelling in her face off and on. There is no common thread to the days she has more swelling then others... If it's fluid, we can't find where it's coming from and everyone is of course out of ideas.
**Well, we did talk with him about the fact Alysia can no longer do the things she loves, that have kept her going for the past 16 years. We told her that we strongly feel it's time to ask for help elsewhere as all her docs are out of ideas and the one thing we all agree on is that motility seems to be the most likely cause of her GI system shutting down, a large cause for her nausea, pain, and stomach distention. I told him I felt we needed to move forward with trying to get Alysia examined at one of the motility clinics. We had briefly discussed this on 2 other occasions but he wasn't ready and wanted to check "a few more things", this time he agreed it was time. His partner has knows people at the Motility Clinic in Cleveland, Ohio (Alysia's pain psych doc does as well) so we will be trying there 1st. You can check out their website here: http://www.nationwidechildrens.org/motility-team
One of the things they will be asking the motility clinic to look at is chronic intestinal pseudo-obstruction. You can read more about that here: http://www.nationwidechildrens.org/chronic-intestinal-pseudo-obstruction
***In addition to all that he is taking her off of one of the medications he was hoping would calm her stomach down as it hasn't done anything for her so we are now down to 24 medications that she uses daily (plus her lidocaine patches and heat wraps). He does want to put her on Pancreatic Enzymes as well as Pro-biotics to see if it will give her any relief (the Panceatic Enzymes are new, the pro-biotics they try every now and then).

Thursday Alysia was seen by her primary pain doc. She is so good with Alysia. Totally reaffirmed for Alysia that her pain is real and that nobody is stopping until they find a way to make her feel better. The balance will be to give Alysia some relief without creating a situation where the Motility Clinic gets false information.
*We won't be adjusting any of her medications until after she gets into the clinic for testing. However, they are putting Alysia on the schedule for another set of injections. This will be in a different place than she has had in the past. They will do injections to help a muscle that wraps around the hips and up the sides. There are several muscles in the "hip flexors" and I'm not sure exactly which the doc is talking about. You can find more info here: http://en.wikipedia.org/wiki/Hip_flexors
I hope to find out Monday when she will be scheduled for the injections. Now, the catch is that she can't be evaluated for a month after the injections because the steroids will effect the abdomen. The injections should help with some of her stomach, side, and back pain in addition to loosening up her hips. Once we hear when she will be going to the Motility Clinic we have to call the pain clinic to make sure we don't do anything to mask issues for the clinic to evaluate. My guess is that she will get to have the injections in January and I really don't think Alysia will get into the Motility Clinic that soon.

Today - Friday Alysia was seen by her primary care doc for a yearly physical. I know sounds a bit silly to have a regular check up when she is seen by so many docs but it's a good time to touch base with her primary and to get things done that I haven't been able to yet. For example, for several months I have been trying to get her tested for PCOS (Polycystic Ovary Syndrome) because one of the hospital ped docs that I love had talked to us about it and said there was a good chance Alysia could have it. Wednesday Alysia's GI doc asked that we have her checked further for GYN issues that could be causing any of her symptoms and he specifically asked about Endometriosis. You can read up on that here: http://www.mayoclinic.com/health/endometriosis/DS00289
I had Endometriosis and I have other family members that have it so maybe.... but Polycystic Ovary Syndrome (PCOS) is often misdiagnosed as Endometriosis so I talked with Alysia's primary doc and he agreed it was more likely she has PCOS and we will start with testing for that. You can read about Polycystic Ovary Syndrome here: http://www.mayoclinic.com/health/polycystic-ovary-syndrome/DS00423
In the mean time he will talk with some GYN docs about how we would go about checking for Endometriosis that wouldn't involve a pelvic exam as there is no way I am putting Alysia through that.
*For the past few weeks Alysia's exhaustion has gotten much worse again. It could be many things but one thing her primary doc wants to check is her Thyroid levels again since that was one of the big issues Alysia had before we discovered they Hypothyroidism. Luckily all the lab work for the PCOS and Thyroid levels can be drawn by her home health nurse on Monday with the rest of her routine labs.

WOW! I hope that all made some kind of sense as my brain is going too many directions. Next week we only have our home health nurse appointment and then it's time to start the Christmas celebrations.

Thank you everyone for the continued support and understanding we receive. You all mean so much to us and we couldn't get through this craziness without you.

Have a wonderful and safe holiday season full of many wonderful memories.
Janet

High Triglycerides

2011-12-09T17:58:00.000-07:00

So, we have been watching Alysia's Triglycerides since mid-October as they have been high. Before that they may bounce up high but they would come right back down, but they still aren't coming down. Monday they drew labs (as they do every 2 weeks) and her Triglyceride level is 266 (normal is 150 or less). 2 weeks ago they started adding something to her TPN that was to help her body absorb and metabolize the fat easier. Her GI doc is growing more concerned so they will be checking the levels again next week and then we should be able to talk about the results and what we are going to do about this.

High triglycerides is a sign of low levels of thyroid hormones (hypothyroidism), liver or kidney disease, and can be side effect of taking medications. We know she has the hypothyroidism, she has Liver and Kidney issues, and the Synthroid they put her on 10/5/2011 is one of the medications that can cause high triglycerides as well.

Really the only thing they can do is adjust her TPN. Of course that is easier said than done because they don't want her to lose calories. She is already on the high end for protein, the only wiggle room they have would be her carbohydrates and they have to look at that carefully as her Liver may not handle that.

Any way, we'll see what he says on Wednesday.

It's been almost a month since we sent an update on Alysia

2011-12-06T18:58:00.004-07:00

You know it's hard to update when they still can't figure things out. I will give it my best shot:

11/15/2011 - Alysia turned 16 years old!!! This is a huge celebration for us as she has doubled her life expectancy and it was 8 years ago in March 2003 that her hears stopped and they weren't able to get it working again for 3 - 5 min (depending on if you ask the nurse that was there or the doctor that came in because her heart stopped.) We didn't do a big party as Alysia just wasn't up to it but with lots of work from family and friends she still had a memorable birthday. We had talked about the whole driving thing months ago and that it's a parents responsibility to help their children determine if their bodies and minds are ready for driving and that really her body and mind are not. She agreed and we talked that I did thing she was ready to have her own computer once she turned 16yrs. She was VERY happy about this and has been loving the computer (we bought in October but she was allowed to have it until her actual birthday) ever since she got it.

11/25/2011 - Alysia saw an eye doctor for a check up and her eyes have gotten a little worse but nothing too bad and no sign that her optic nerve is doing anything odd again. The good new for Alysia is she got new glasses!!! The only reason to get an eye exam is new glasses!!! Check out the picture.

11/28/2011 - Alysia got a new broviac catheter put in they put it back in the same place which is nice since they didn't have to try insertions in several areas like last time. Once again it was stubborn to get placed but they got it and it's working great. Now we just got keep it from getting cracked like the last one.

11/29/2011 - Alysia saw her Psych doc who is amazed at the difference the Sertraline has made. She didn't want to make any changes and is letting us go for 2 months before going back since Alysia has had so many appointments lately...

11/30/2011 - We met with a guy and talked about getting Alysia a wheelchair. She had one years ago when things weren't going so well and she had pain and things were impacting her ability to get out and be a part of things. Well, we are back to that point again. He was great! He talked to us and due to her hand issues he wants to try and get her an electric wheelchair in addition to a manual one. This would mean she could be independent at place like the mall, zoo, museum, field trips, etc... We are so excited that he could see all these needs even more then we hoped for and is willing to try and get everything covered. He has submitted the paperwork, We will likely need to see one of the OT/PT therapist there so that she can submit a report regarding needs as well. We should know for sure in about 4 months.

That brings us to today 12/6/2011 - Alysia had a colonoscopy. They said they had to do a lot of "manipulation" that the colon looks healthy to the naked eye but he did take some biopsies and hopes to find some answers there. I did ask what the next step would be if nothing was found in the biopsies (remember she has biopsies all the time she had the colon biopsies a year ago and nothing has ever been found with the biopsies.) He didn't really want to discuss that yet but did say we will likely need to take a better look at motility and will likely need to go to a motility clinic to have the testing done and might look at one in Ohio. We are to see him next week for follow up and I guess we will find out more then.

Next Thursday we are going to see her primary pain doctor as her pain is not being controlled at this point. I am hoping they can give us help not only with the back pain but also with the GI pain she continues to help. Alysia hasn't been able to attend her dance classes and continues to miss out on activities, movies, family gatherings, and social time with her friends.

I hope you all are having a wonderful holiday season and treasuring each moment you get to spend with your family and friends. I feel that is the most precious things the holidays bring to us - memories to hold close to our hearts.

Stay safe and warm
Janet

Alysia will be turning 16 years old 11/15/2011

2011-11-10T16:08:00.004-07:00

Can you believe it?!?!? 16 years old!!!! Crazy, I'm sure I'm not old enough to have a 16 year old.... Ok, now on to the real reason for the email. It has been about 3 weeks since I updated everyone on what's been going on. Things are just too crazy to sit down and try to process the information. Anyway, here is my best effort:

Friday 10/28/2011 Alysia was seen by one of the other doctors in the GI practice just to get another set of eyes on her to see if she could come up with any ideas that have been missed. The 1st thing I noticed was that in 10 days Alysia had gained almost 2lbs - of course once again nobody can figure out what's going on and she she continues to gain when it's obviously unhealthy weight and likely retaining fluid somehow... The doc was great but it's really hard to try and catch someone up on Alysia's history. After all was said and done her thoughts are that her Colon might not be working correctly and that her rectum looks like it may be smaller and she is concerned it may be starting to stricture. She ordered a barium enema and wanted us to talk with Alysia's surgeon about it when we see him.

Alysia did celebrate Halloween. She had a sleepover with her friend Amy the night before and they stayed up and watched movies. Halloween evening she got to go trick or treating for about 20min and she was so proud of herself. Check out the picture above. She paid for it the following days but just getting to do a normal tradition and something non-medical did her wonders!

She has only been able to make it to 2 dance classes I think. It's really weighing on her that she isn't up to going but thankfully her dance show has been put off until 1/2012. Hopefully they will get something figured out before then.

Monday 11/7/2011 Alysia had the barium enema. You know, they say it's not invasive...really....anyway, I spent several days before this trying to information on how they planned on doing an enema when in 11/2010 we couldn't do one the was made for a 2 year old and they think her rectum is even smaller now.... UGH!!! I finally got to a tech at the hospital that knows us and she explained how this one would be done. (picture above) So, luckily her favorite Radiology Physician was doing it and he is SO amazing with her and makes sure she has every question answered before they even talk about starting anything. The finding: prominent rectal shelf, area of spasm in the mid-sigmoid colon, Cecum is slightly high in the right mid-abdomen, no strictures, but poor evacuation of the contrast.

Thursday 11/10/2011 (yep today) Alysia was seen by her surgeon. Love him! He is straight forward but he has seen so much with Alysia he gives her credit for all that she has been through.
1) He will place a new broviac 11/28/2011 at 9am (have to check in at 7am); her arm where the pic-line is is just a mess and starting to break down. Alysia was disappointed it wouldn't be sooner but with the holiday and all it just couldn't be worked.
2) We talked to him about the focal outpouching (blind-ending fistulas)sights off of her Esophagus. He really doesn't want to do anything about these right now. They aren't causing her any pain and she is swallowing fine. I totally expected this as she has so much done to her we all agree that the less done the better.
3) He looked at the report from the Barium Enema and he said that there is nothing surgically wrong that he sees he could fix and it would make her stomach and side issues better. He said that he would refer back to GI for them to continue to try and figure it out.
4) We brought up the concern that Alysia's rectum may be getting smaller and may be starting to stricture off. He said that he really doesn't think that is happening as she hasn't turned jaundice through all this. However, when she is asleep and having the broviac put in he will take a look at her rectum and make sure everything looks ok.

I think that pretty much catches you up. You know, when you put it in note it really doesn't sound like much. I can tell you it has felt like a ton. Alysia is miserable and just this past Tuesday her face was swollen even more than the typical swollen it has been. Every day is a struggle and we continue to push through to get some good memories. Our new working theory is that time doesn't matter; if she is able to attend something or do something for even 10min it's worth doing because that is a wonderful memory to have for herself and all involved.

You all have a great Thanksgiving. We are very thankful for each and every one of you and the support, love, and understanding we receive.

Janet

Low Cortisol

2011-10-18T20:56:00.000-06:00

We now all know that Alysia has low cortisol which is called Central Hypopituitarism (adrenocorticotropic hormone (ACTH) deficiency). Today we saw her Endocrinologist to go over what this is going to mean. Turns out it is a bit more serious than I thought...yes....I knew it was an issue that would take some getting use to but it goes a bit farther then that. She actually has to wear a medical alert bracelet at all times now (you would be amazed just how much this was stressed today.)

Ok, so many you who use to get my "auto-pilot" talk when Alysia was little: "So, if the g-button comes out it's no big deal. It's super messy but she'll be fine. Just sit her down with Kleenex over the hole and call me so I can come put in a new one. If for some reason the broviac gets pulled out make sure you apply pressure and call 911 as that would be an emergency", get ready because here we go again. Here is the new deal that is to be added to the info that is so ingrained in your heads.

Low cortisol can be life threatening if not managed correctly. She has to have her medication on schedule (twice a day) and it's important to give her the right amount depending on what is going on. This is more my issue than an issue for anyone else, but it's good to know. Remember, Alysia's body doesn't make the correct amount of Cortisol and we now have to give her the amount her body needs. She will need increased amounts when sick, stressed, and having procedures/surgeries. Basically when your body would typically go into high adrenalin mode your body produces extra Cortisol to deal with it. There are things that everyone needs to be aware of and to watch for that would indicate something is going on and Alysia isn't getting enough Cortisol. Of course, as pointed out several times today, Alysia will be a bit trickier and will require more adjustments then other do. Alysia already has some of these issues so it would be watching for changes in "her normal".

So, here is the list:
Abdominal Pain, Dehydration, Flank Pain, Joint Pain, Low Blood Pressure, Rapid Heart Rate, Skin Rash or Lesions, Vomiting (Retching for Alysia since she has a Nissen), Confusion or Coma, Dizziness or Light-Headedness, Headache, Loss of Appetite, Nausea, Rapid Respiratory Rate, Slow/ Sluggish Movement, Unusual and Excessive Sweating on Face or Palms, Darkening of the Skin, Fatigue, High Fever, Loss of Consciousness, Profound Weakness, Shaking Chills, Unintentional Weight Loss.

If something were to happen to indicate the likelihood that Alysia is low on Cortisol and her body is in crises then she would need to be taken to the ER.

Gotta love these visits....

Alysia update/status

2011-10-17T16:40:00.001-06:00

I have had some calls, emails, messages asking how Alysia is doing so I thought I would shoot an update even though it's not much.

Alysia continues to have severe pain; her request is that she just wants the pain to go back the way it was when she could do things...breaks my heart. She isn't asking for it to be gone, just for it to be back to her livable level of pain.

Alysia continues to have a lot of nausea. This is likely a combination of medication, stress, pain, distended stomach. She is having more nausea after she gets her normal meds but it also coincides with pain and stress.

Alysia's stomach is still distended. It comes and goes over the past 1 1/2 months but has been distended since last Wednesday. We don't know what's causing this.

The blood infection she has is Entrocaucus and this is a GI bug indicating that it somehow is coming from the GI area but we aren't sure how or why. She continues to run fevers of 99s and her cheeks continue to flush red especially at night.

Alysia's face is still swollen. I say it's about the same, GI doc thinks it's a bit less. Still no explanation of what that is all about.

Today we did see her GI doc. I also spoke with him one on one so that we could talk openly about what may or may not be going on with so many things seeming to fall apart. We have had these conversations before because I am a firm believer in quality vs. quantity. He agrees that something has changed and he agrees that nobody can figure out what or why; with all the tests and things that have been done there is not indication that her body is shutting down or wearing out but agrees we all do have to be realistic but now isn't the time to say a line has been drawn. Everything points to hormone/endocrine issues that are then effecting the rest of her body. He agrees she looks awful and he sees she is miserable and that is his biggest worry as well. So here is where we are:
1) GI and Endocrine are communicating and will continue to do so.
2) GI will be calling Alysia's pain doctor to start that communication as something has to be figured out how to help her feel better
3) 10/28/2011 at 9am Alysia will see one of the other GI doctors (we met her this last hospital stay and she was really good with Alysia) so that we can have a new set of eyes to see if something obvious is being missed.
4) GI is taking her off of the Iron that she was taking when she became so anemic to see if she can stay within normal limits without taking it as it is really hard on the stomach.
5) GI is taking her off of her preventative antibiotic Flagyl and putting her on Alinia as it's a more specific GI antibiotic.

Tomorrow we see her Endocrinologist but I don't anticipate much to happen.

I want to say what an amazing group of people we have in our lives. I truly feel blessed and we wouldn't be able to handle things without all of you. We have had and continue to have support from family, friends, doctors, work, and so many other areas of our lives. I don't know if I'm making total since at this point but hopefully good enough.

Thank you for everything and we will continue to stay in touch.

Well we got tossed off the Hospital roller coaster

2011-10-14T19:54:00.001-06:00

LOL!!! Sorry, really gotta find any humor you can some times. They did decide to send Alysia home today. The blood infection is under control and they know we have plenty of experience with home IV antibiotics. They can't do anything more for her stomach, side, and back pain or her nausea.

The ped doc today said that the pain clinic had told them they didn't have anyone covering and they couldn't help. This morning I put a call into the pain clinic advising that I felt it was in poor taste that they didn't have ANY doctor available to talk with the hospital doc about helping reduce my daughter's pain level. I asked them to make sure some called the hospital ped doc and for someone to call me back. They did call me back and advised that she did find a doctor to consult with but the only thing they could suggest was for me to bring Alysia to that ER so their ER docs could look at her or better yet to have the hospital we are at transfer Alysia to their hospital for care. OMG!!!!!! I lost it and advised them that neither of those things would be happening as there is no way that their GI docs are getting anywhere near my daughter as I don't approved of the care the provide. She became much nicer after my little lecture of poor care at that hospital. She suggested that we continue with what we are doing for now and try and get Alysia's GI doc and Pain doc to talk on Monday. Turns out that one of the other docs (not actually covering for Alysia's pain doc) did call the hospital ped doc after my conversation with the nurse and he said that since the Psych doc just added in a new medication he was worried to add something else so soon. At least he called!!!

So, she will have her pic-line in for now and she will see her surgeon in a month to evaluate when a new broviac will be put in. Alysia will see her GI doc on Monday afternoon and I hope that they will come up with some ideas on what the heck is going on and how to make her feel better.

They switched her to IV Ampicillin that will be given every 6 hours. I have been learning this gravity infusion system and it's not been as hard as I was afraid of. I will be interesting getting it to drip just right in the middle of the night....

Anyway, we are exhausted and trying to catch up on things. Have a great weekend and we will talk with you later.

Really?!?!?!? Frustrating day all around

2011-10-13T21:53:00.000-06:00

One of the most frustrating things about having to work with so many doctors is contradicting information.

This morning was truly crazy as we had a doctor saying she would be at the hospital for 10 days starting yesterday & we had a doctor saying she would likely be going home Friday. UGH!!!!!! So, they finally come to a consensus and decided that she will go home next week at the earliest.

Alysia was really wanting to know if she would be going home with a new broviac or with the pic-line. 2 docs said a broviac, 1 doc said pic-line and NOBODY had talked to her surgeon as really he has to make that final decision....UGH!!!!!!

It was determined that she does not have a bladder infections and it was just contamination. The blood culture drawn yesterday is negative so far but they watch it for 5 days before finally call. There was huge back and forth discussion about what antibiotic Alysia should be on for the blood infections and it was finally decided to leave her on the Vancomycin. They still don't have her on the right amount and increase her dose again today. They are still concerned that the infection isn't completely cleared and watching her closely to make sure it doesn't make it doesn't cause any trouble with the heart.

Today I had 1 too many doctors advise me that they weren't going to work on Alysia stomach, back, & side pain or the nausea while she was in the hospital as that is a chronic issue that she has been dealing with outpatient. I advised the doc that this is NOT her normal everyday pain that my daughter has learned to live with, that this is a new issue that for the past month and a half people have continued to blow off and put on the back burner. I said if they weren't going to continue to try and figure out what is going on then I wanted to know what they were going to do for pain control... She actually had the nerve to tell me that is an issue I should be talking with her pain clinic doc about. I looked at her with death-ray eyes and said really! If you are telling me you want me to call her pain doc that only treating her for back issues with scoliosis and vertebra issues NOT pain caused by GI issues. She asked what I was doing for her at home and advised that she is on all her pain clinic meds and needing Advil and Tylenol around the clock daily as well. She didn't like that answer as Tylenol and Advil can mask fevers and isn't the best thing to be on long term....DUH! That is when I looked at her and said well I have been trying for a month and a half to get someone to help with this but have had no luck. Also, I have been asking for someone to look into the reason why the stint has done NOTHING to help with the pain when it has worked every single other time. She asked how Alysia's pain was now, advised her that they are giving her Advil and Tylenol for her break through pain and she continues to have to ask for pain meds before she is allowed to have more. She offered to call Alysia's pain doc so they could come up with a better treatment plan for the GI issues. When she left I did finally go express my extreme anger over the doctors continuing to try and blow off Alysia's pain and nausea as "chronic issue" that they don't need to deal with. Again advising that what is going on now is very different than the chronic issues Alysia has learned to deal with and still live a life. They said they would also talk with the doc... The doc did come back in to let us know that Alysia's pain doc is out of the office until Monday but they would have her call the hospital doc when she got in.

Today she is about 36 hours with no fevers, we have a preliminary negative result for the blood culture done yesterday, she continues to have severe stomach/side/back pain, she continues to have nausea, and for the 2nd day her stomach is distended again.

Fingers crossed for a less emotional and frustrating day.

The hospital roller coaster

2011-10-12T22:50:00.000-06:00

This trip to the hospital is a bit crazy and the information we get changes minute by minute. Here is the "understanding" as of now...

Alysia had the Esophagram gram to day (a barium swallow study). Lucking we knew the guy that was performing the test and it was one of Alysia's favorite. The problem Alysia has with a barium swallow is that she gets stomach pain and nausea. So, knowing Alysia as he does he gave her huge tips so that it would take as little barium as possible. The findings...she has a stricture but it's not closed (7mm I believe is what he said), this isn't new as she always have a stricture of the Esophagus. The actually found that she has 2 blind-ending fistulas off of the Esophagus, no leaks were found and it's not attached to anything else (earlier in the morning there was concern that she had a hole in the fistula.) The rumor is that they won't likely do anything about the fistulas but we haven't heard that officially.

Alysia does have a blood infection and a bladder infection, both are growing Entrocaucus. Typically that can be treated wtih Amoxicilin however that last time Alysia got Entrocaucus it turned out to be Amoxicilin resistant so until they get the sensitivities back they are keeping her on Vancomycin. So, the blood infection didn't stay just in the broviac and it has been circulating through her blood stream which is why she feels so bad. This will mean that treatment will be more aggressive and extensive. Of course they aren't up to talking about what that will actually look like yet. So far all cultures are positive.

Today Alysia continues to have severe pain and nausea. Her stomach is a bit distended so we aren't sure what's up with that. They continue to do lab work to check liver and pancreas functions. Not sure what they will be doing to help with that as it all had to be put on the back burner due to the blood infection. Rough mental health day as she is having trouble dealing with "being tortured" and not being able to get any answers. However, she has yet to run a fever today!!!

Thanks for all the support we have been getting,

Broviac was removed and Pic-line was put in.

2011-10-11T22:19:00.000-06:00

Because they did the respiratory and c-diff cultures Alysia is being handled with precautions - anyone examining or doing anything with is to wear mask, gown, and gloves. I hope this will end tomorrow but we'll have to see; they have to have negative results before they can remove them.

The blood culture that was done last night (venipuncture - not through broviac) is growing something and all believe that she has a blood infection. The floor doc tonight did caution that it could be a contaminated culture but they will continue to treat for now. Luckily they started her on 2 IV antibiotics once admitted last night just in case she did have a blood infection. If she has a blood infection there has to be a negative culture for at least 48 hours and she has to be without fevers before they will even begin to talk about her going on.

Today they did remove the broviac and they have sent it to the lab to be cultured to see if it comes back showing any infection at the tip of the catheter. For now they put in a pic-line so that they can use it to draw blood, give antibiotics, and give her IV nutrition. Once the infection is gone they will figure out when they will put in another broviac.

Tomorrow they are going to do an Esophagram (barium study) so that they can get a look at the Fistula that is growing on her Esophagus so that the surgeon can decide what if anything needs to be done.

I'm sure there is more to say, but I'm exhausted and have got to get to bed.

Thank you to everyone offering support, food, and assistance. Right now there just isn't anything that any of us can do.

Hugs

Alysia was admitted to the hospital

2011-10-11T02:36:00.001-06:00

What a day. I just got home from the hospital to get a few hours sleep before going back. Today Alysia saw her psych doc who added in a medication to help her deal with all the medical stuff that is doing on. While we were there Alysia's GI doc called (we had called his office this morning because Alysia's pain is still severe and she is still having trouble with nausea) and said they wanted her to be looked at in the ER. So, they did an x-ray and the stint is still where it should be. They checked her lab work and there is some indication that she may have Pancreatitis. They talked with GI and all agreed that she could go home and just be seen in the office Tuesday morning. I had signed the discharge papers and they did a quick temperature check and she was running 101.4 (while on Advil). UGH! Call to the GI docs again and yep, she has to stay. By the time we got to the floor she was running almost 102.

1) They are checking for a blood infection ( broviac won't draw back so they had to poke her several times.) They are concerned that the broviac repair that was done back in 9/2011 may be the cause of it not working of maybe the cause of a blood infection.
2) Checking for virus (had to suction her nose)
3) Checking for strep (she had white stuff in her throat)
4) Checking stool sample
5) Checking urine sample

They are starting her on 2 IV antibiotics just to try and get ahead of things. Tomorrow we will have to talk about what they are going to do about the broviac as they will have to figure out some kind of access for lab work and really we need to know why it's not working.

I'm tired, bottom line is that once again we don't know what's going on and we don't know how long she will be in the hospital.

Alysia is home

2011-10-06T15:51:00.001-06:00

They decided not to keep Alysia over night which is great. I'm still processing things a bit but Alysia did great. They dilated the bile duct and actually did a bit of cutting to make the area wider. They put in a temporary stint and she will have to go back in a couple of weeks to have it removed.

They also ended up dilating her Esophagus today which isn't a huge surprise. However, there appears to be a Esophageal Fistula forming just below the area where she had the Tracheal Esophageal Fistula (TEF) repaired in 1995 and 1996. They did have one of the pediatric surgeons come in today and take a look but there is no sign it goes anywhere but they didn't scope it since they have no idea what's going on. Not sure how or why she suddenly has the start of one but when they go back in to remove the stint they will also be checking this out to see how big it is and what they need to do to repair it. They will have a Pulmonologist with them when checking this out. Once they get everyone coordinated (both GI docs and the Pulmonologist) they will let us know when this all will happen because they also want it on a week when her regular GI doc is covering at the hospital and is on call.

Right now she is hurting and still dealing with nausea. Hopefully this will decrease over the next couple of days.

To top the day off one of her Guinea Pigs (Checkers) passed away while we were at the hospital... Yesterday Checkers had a seizure while I was holding her but seemed to recover fine - eating and drinking, moving around. Today when I got up I couldn't get her to eat - not her favorite lettuce and not even her favorite sweet treat. Her tummy was bloated and hard. My Momma took her to the vet for us while I was with Alysia at the hospital and she was dying and she was in pain so we decided to put her to sleep. Needless to say it's been a very emotional day .

Thanks for the support we have gotten

Hopefully some relief for Alysia

2011-10-04T12:51:00.000-06:00

It's been a rough time but it looks like we may finally be getting some help for her. Alysia continues to have swelling or puffiness in her face, she is having increased pain in her stomach, back, and side, and increased nausea. We have her on scheduled pain and anti-nausea schedule but it still isn't really keeping things under control. This morning we finally have progress to report.

Her GI doctor has scheduled her to have an ERCP (you can find info at http://en.wikipedia.org/wiki/ERCP) and will put in another stint in her common bile duct. This should have a ton with the pain she is having. She will have to stay the night in the hospital as sometimes she does get Pancreatitis (you can find info at http://en.wikipedia.org/wiki/Pancreatitis) with this.

Her Endocrinologist called with the results of the Cortisol and she is deficient:
Normal Cortisol level is 18 and above and back in 2005 Alysia was well within the normal limits.
9/22/2011 Alysia's Cortisol levels were 1.8,
9/26/2011 her Cortisol levels were 3.7 and 4.7 (results from 2 different labs.)
So, Alysia is officially diagnosed with Central Hypopituitarism (adrenocorticotropic hormone (ACTH) deficiency) and you can find info at http://www.mayoclinic.com/health/hypopituitarism/DS00479/DSECTION=symptoms. He says this doesn't explain the swelling or puffiness. He is starting her on Cortif (you can find info at http://www.drugs.com/pro/cortef.html). Luckily Alysia's GI doc had an MRI of her head done last Friday 9/30/2011 that included the pituitary. It is normal so there is not explainable cause for the sudden issues, but at least Alysia doesn't have to have another MRI and she gets to start on medicine.

I want to thank everyone for the support we have gotten. You may have noticed that I stopped returning phone calls and I thank you for being understanding about this. It comes to a point were I can't talk about things any more and Alysia can't hear about it any more. We still love knowing that each of you are thinking of us and that means a lot to us; we just run out of energy.

I think that is all the news I have for now.

Low Cortisol

2011-09-23T18:34:00.000-06:00

This morning I talked with Alysia's Endocrinologist and amazingly he had already been contacted about Alysia's Hypopituitarism Evaluation that was done yesterday. Apparently a normal Cortisol level would start at 18; Alysia's results came back 1.8. This is SUPER low and very concerning, so much so that he is having Alysia repeat the test Monday morning. This result is very different then when she had this done in 2005 and was well within normal limits. If it comes back low again then she will be put on medication (pill form, no shots) to help get things working better. I haven't done a ton of research on this as I want to wait to see what exactly her diagnosis comes back as. However, this is a good site for information on Cortisol:
http://en.wikipedia.org/wiki/Cortisol

and Hypopituitarism:
http://www.mayoclinic.com/health/hypopituitarism/DS00479/DSECTION=symptoms.

Next week is going to be a rough one as there are just a ton of things going on:
Monday - Hypopituitarism Evaluation (she got a severe headache, nausea, and lightheaded after the one yesterday)
Tuesday - Pain Clinic (have to see a different doctor that we haven't seen before)
Wednesday - GI doc
Thursday - Primary Care
Friday - MRI of her head

Follow up from Alysia's hospitalization

2011-09-20T11:57:00.002-06:00

So we continue to see docs and trying to figure out what's going on. Today she saw her Endocrinologist and unfortunately he doesn't have any explanations for what's going on. Her low Cortisol levels wouldn't explain the swelling she has but he is going to do a Hypopituitarism Evaluation on Thursday morning. He doesn't feel it will show anything as it's always been fine in the past but we need to make sure since things are suddenly going crazy. It would be extremely odd for her to have a 3rd rare disorder (growth hormone, thyroid and pituitary) but this will give complete info and let us know if any of this is endocrine related.
Info on Hypopituitarism: http://www.mayoclinic.com/health/hypopituitarism/DS00479

Her GI doctor has scheduled an MRI of Alysia's head for 9/30/2011 to make sure everything is ok there.

Since April so many things have gone crazy with her body and nobody knows what's causing it all. Check this out, we put together a list of changes and issues since mid-April, 2011:

Pain Control:

6/9/2011 – Increasing pain in Alysia’s upper back, continued pain in stomach and right side. Dr. Slover increased her Methadone to 25mg/day (10mg am, 5mg afternoon, 10mg in pm), increased Baclofen to 20mg/day (5mg when needed in am, 5mg when needed in afternoon, 10mg in evening), and added Lamictal (starting at 12.5mg, increasing by 12.5 weekly until reaching a total of 100mg/day). They will schedule another nerve block for the upper back and neck area. 6/10/2011 started the 12.5mg/day Lamictal. 6/17/2011 increased Lamictal to 25mg/day. 6/24/2011 increased Lamictal to 37.5mg/day. 6/27/2011 reduced Lamictal to 31.25mg due to extreme drowsiness. 7/8/2011 increases Lamictal back to the 37.5mg/day. 7/15/2011 increased to 50mg/day Lamictal. 7/22/2011 increased Lamictal to 62.5mg/day. 7/29/2011 increased Lamictal to 75mg. Lamictal was increased to 87.5mg 8/5/2011. Alysia was brought up to dose on Lamical 100mg 8/13/2011.

7/26/2011 – Dr. Slover performed a Migraine Nerve Block and Migraine Trigger Points Injections.

8/2/2011 – Talked with the pain clinic. Alysia is still having severe pain in her upper back (headaches/migraines and shoulders are much better). They are scheduling another Nerve Block for 9/6/2011. For now she is to use Lidoderm Patches for 12hrs at night and use Voltaren Gel 3 – 4x/day during the day.

8/16/2011 – Talked with the pain clinic and due to Alysia’s extreme pain they are moving up her Nerve Block to 8/23/2011. 8/17/2011 - Tried adjusting medication schedule to help with pain control.

8/18/2011 – Pain clinic put her on Indomethacin 25mg 3 times a day.

8/23/2011 – Dr. Slover performed Trigger Point Injections from Scapula to mid-back.

Skeletal

8/3/2011 – Alysia saw PA-C Shasta Beal. Appears no progression in her Scoliosis. It is felt that Alysia needs to continue with the pain clinic and dance. Back to see Dr. Shay Bess in 1 year.

Genetics

8/8/2011 – Alysia saw Dr. Tsia. The genetic testing has greatly improved and there is a much better of finding a diagnosis for Alysia now. They are going to check 2 things:

1) TBx5 (gene). This will tell us if she has Holt-Oram Syndrome which they say could easily fit with Alysia especially given her left hand/thumb/arm issues, her small feet, her cognitive functioning, and her heart issues.

2) Cornelia de Lange syndrome testing which when reading about this it could easily be Alysia as well.

3) Chromosomal microarray - for genetic testing of individuals with unexplained developmental delay/intellectual disability (DD/ID), autism spectrum disorders (ASD), or multiple congenital anomalies (MCA).

Mental Health

5/17/2011 – Alysia saw Dr. Moore and she was happy with the improvements that she is seeing especially with all the medical issues that have been going on. She agreed with Alysia that a bit more support might help her get over the last hurdles. She increased Alysia’s Remeron to 22.5mg/day.

Gastroenterology

4/21/2011 – Dr. Best removed Alysia’s stint that was in her common bile duct due to continued pain and nausea. He also took biopsies of bowel, stomach, and esophagus.

4/25/2011 – Alysia was seen by Dr. Barrios due to continued extreme nausea, diarrhea, and unable to eat. 4/24/2011 we did put her on her feeding pump over night with 40cc/hr of Pedialyte to try and help with hydration. Alysia is lost a lot of weight since her last visit with him. The results of the biopsies aren’t back yet. He is increasing her Kytril to 1mg 2x/day, and putting her on Peptamen Junior (1/2 strength 40cc/hr 10hr/night) for now. We are to call tomorrow by 4pm with an update.

4/26/2011 – 5/1/2011 hospitalization – 4/27/2011 A Contrast Upper GI found that there is a blind-ending loop of jejunum off of the anterior side of the stomach, a loop of bowel is seen extending towards the biliary tree which is mildly dilated and instantly opacifies all the biliary system, and that the entire small bowel is on the right side of the abdomen and the Colon is on the left. They put in a Gastrostomy-Jejunostomy Tube and added the medication Reglan to her daily medicines.

5/13/2011 – Alysia was taken off all oral and GJ-tube feedings. A broviac catheter was inserted and she was started on TPN 16hrs/day.

5/18/2011 – Dr. Barrios took Alysia off the Reglan, she is to remain on all other medications for now. He has no intention of pushing her to eat again but states it would be nice at a later date to try but the focus now is what makes Alysia feel best and happiest (even if it’s not medically ideal).

5/26/2011 – Due to increased pain, increased nausea, a dark brown substance found in Alysia’s Gastrostomy-Jejunostomy Tube, and medication that was put into Alysia’s Gastrostomy Tube coming out of Jejunostomy Tube we removed the Gastrostomy-Jejunostomy Tube and put back in a regular Gastrostomy Tube.

6/6/2011 – Alysia was seen by Dr. Barrios due to more dark brownish substance leaked from around Alysia’s Gastrostomy Tube 6/5/2011. He feels that it may be old blood but the question is where is it coming from and what is causing it.

6/7/2011 – Dr. Barrios performed an Upper Endoscopy and didn’t find anything alarming and no ulcers. He did find irritation/inflammation of the stomach lining around the Gastrostomy Tube area. He collected biopsy of the stomach and Alysia will see him next week for results.

6/13/2011 – Saw Dr. Barrios for the biopsy results and all came back fine. He agreed Alysia needs to have some down time to get back to enjoying some life before exploring G-tube and oral feedings again. If/when this is attempted it will be down the road (6 – 9 months maybe) and likely just start with water. It was agreed that Alysia will have to have huge input on this and we will have to work within her comfort level. He took her off the Vitamin D as she is getting vitamins in her TPN now.

8/5/2011 – Dr. Barrios put Alysia on Ferrous Sulfate (Fer-in-Sol) 660mg 2x/day as her Hemoglobin has been extremely low for the past 2 months (10.5 6/20/2011, 9.7 7/5/2011, 9.3 7/18/2011, and 9.7 8/2/2011).

Nutrition

4/25/2011 – Alysia hasn’t been able to eat her “normal” oral diet since March. The past 3 weeks or so she hasn’t been able to eat much at all. She was seen today by Dr. Barrios and he is trying her on Peptamen Junior (1/2 strength 40cc/hr 10hr/night) for now to see how she does and will continue to try and find the cause of the feeding issues that have been going on since 1/2011.

4/26/2011 – 5/1/2011 hospitalization – They put in a Gastrostomy-Jejunostomy Tube and added the medication Reglan to her daily medicines. They were then able to advance her continuous Jejunostomy tube feedings to 70cc/hr 24hr/day of full strength Peptamen. Due to continued Panaceas issues and the new extreme motility issues Alysia is to be on a low fat and low fiber diet. Alysia is also not to have any acidic foods due to her continued stomach problems.

5/13/2011 – Alysia was taken off all oral and GJ-tube feedings. A broviac catheter was inserted and she was started on TPN 16hrs/day.

Bladder/Kidneys

4/26/2011 – Both urine cultures (one through the outpatient lab and the other in the ER) came back negative for infections.

8/30/2011 – Appears Alysia has a urinary tract infection. Sending sample out to culture. Starting her on Cephalexin 625mg 3x/day for 10 days.

9/2/2011 - The culture came back again with Pseudomonas and Alysia was put on 3 day course of Ciprofloxacin. Alysia continues to feel she isn’t getting enough fluids and says she isn’t urinating like normal. 9/9/2011, 9/13/2011, and 9/17/2011 urine cultures came back only showing contaminate bacteria.

9/14/2011 – 9/18/2011 hospitalization – Alysia’s bladder seemed to be having decompressing. Not sure what underlying reason is but it corrected on its own after a couple days.

Endocrinology

9/2/2011 – The lab work came back and showed Alysia has Central Hypothyroidism. Dr. Maniatis put Alysia on 50mcg/day of Synthoid.

9/18/2011 – Lab work done during PSL hospitalization Alysia’s Cortisol levels came back low.

Audiology

7/12/2011 – Alysia was diagnosed with bilateral outer ear infections.

Hosptializations

April 26, 2011 – May 1, 2011
At Rocky Mountain Hospital for Children at PSL
For Gastrostomy Tube conversion to a Gastrostomy-Jejunostomy Tube

May 13, 2011 – May 14, 2011
At Rocky Mountain Hospital for Children at PSL
For Broviac Insertion and started TPN regiment
September 14, 2011 – September 18, 2011

At Rocky Mountain Hospital for Children at PSL
For Unexplained swelling in her face
For increased back, side, and abdominal pain
For increased nausea

Procedures

April 21, 2011
Stint removal from the Common Bile Duct and biopsies of Bowel, Stomach, & Esophagus

April 28, 2011
Gastrostomy-Jejunostomy Tube (Jejunostomy – only able to insert it to the Duodenal)

May 13, 2011
Broviac Catheter Insertion

May 26, 2011
Gastrostomy-Jejunostomy Tube removed
Gastrostomy Tube inserted

June 7, 2011
Upper Endoscopy Stomach Biopsy

July 26, 2011
Migraine Nerve Block
Migraine Trigger Points Injections

August 23, 2011
Trigger Point Injections from Scapula to mid-back

UGH!

Alysia is home from the hospital

2011-09-18T14:10:00.001-06:00

The blood work this morning showed that her Cortisone levels are low. They were worried they may have been high as that could case the swelling in her face. So, since it wasn't high they released her and we will have to follow up with primary care, Endocrinology, and GI. We still have no answers but Alysia's bladder seems to be doing better but continues to have issues in the mornings. The pain and nausea are better which is what Alysia's main concern was.

Thanks for the support we have been getting

still no answers...

2011-09-17T22:47:00.000-06:00

Today was nice as the same floor doc was on as was working with us yesterday (1st time this stay we had consistency with the floor docs) and Alysia's primary GI doc was there today and we both felt so much better just with those 2 things in place.

Alysia's face is still swollen. The floor doc could even tell that Alysia's cheeks were a bit more swollen then yesterday. They had a CT scan of her sinuses done and it came back fine. We all talked about getting a pharmacy consult just to see if any of them medications could be causing this after long use or maybe a combination of meds is having this reaction...I haven't heard back on that yet. They did call Alysia's Endocrinologist today (he was the actual doc on call!!!) so they were able to get info from him and see what he thought. He said that the Hypothyroidism is due to the Thyroid Gland itself and not the communication with the glad. He suggested a simple blood test that should provide all info they are needing to rule our Endocrine issues. He also said that he didn't feel an MRI would give any helpful information at this time. The blood work will be done in the morning and will have a lot to do with determining the next step for Alysia.

Alysia had some issues with her bladder this morning and it not wanting to decompress, however, after much effort on Alysia's part she was able to and hasn't had any more issues with it today.

Her stomach (once the was able to urinate) is much much better. Hardly distended and the pain is WAY less.

Side pain improved right along with her stomach pain.

Not sure if she ran any fevers today as the nurse we had got pretty busy with another kiddo so we didn't get the temps taken like the doctor wanted and Alysia was requiring extra Tylenol and Advil due to her back pain.

Alysia has lost almost a kilo since she was admitted Wednesday. I'm thinking fluid but I will see what the docs think tomorrow.

Alysia had a very rough morning as she is struggling with not having any answers still. She had about 1 1/2 hours where she was very angry, upset, and frustrated. She had decided that it was my fault that she was there, I wanted her there just for the heck of it, and I was having tests done to torture her... Ya, VERY rough morning. The afternoon was better and she even got out of bed.

So, where does this leave us... if the blood work comes back showing something wrong then she will stay and have to have more testing done. If it comes back fine they she will likely be sent home and we will have to have a plan in place for outpatient care. I honestly felt that we were both heard today and they have truly done all that could be.

Rough day at the hospital

2011-09-16T22:34:00.001-06:00

So, we have no answers still and I'm really tired of doctors saying everything is "normal" and there is no reason to keep her there.

Her face is still swollen. Thyroid is fine. The Doppler yesterday of her neck and arms was all fine - no clots, no blockage from the broviac. After much "debate" they are going to check for a sinus infection with either a CT Scan or x-rays.

Her stomach is still distended. The abdomen and pelvic ultrasounds from yesterday came back fine. I did finally get them to do a bladder scan after much "encouragement" and she was really full. She isn't "feeling" like she needs to go at all but if she goes in and really concentrates she is able to empty (we think). They did do ultrasound of her Kidneys and all looks fine. They did another urine culture and so far it is negative (the one Wednesday was negative until Thursday evening) so she is likely on the the correct antibiotic. The urine sample that she is hydrated so that was good to know.

Continues to have back, side and stomach pain. Continues to have nausea issues.

They were able to draw blood work from the broviac today with no issues. Do to the odd behavior of the broviac of the broviac yesterday they are going to start adding heparin to Alysia's TPN.

Alysia once again ran a fever this afternoon. Nobody can explain why she is suddenly doing this.

Needless to say it was a rough day all around. Alysia had to keep hearing me say I wasn't comfortable taking her home. That I wanted more done to find out what's going on. It was a day of high emotions, anxiety, and frustration.

So, what am I asking for before we go home???
1) Find the cause of Alysia's suddenly swollen face.
2) Find the cause of Alysia's sudden fevers of 100.1 - 100.6
3) Have a plan in place regarding the distended abdomen, her back/stomach/side pain, and nausea

Hopefully we will have a better day tomorrow. Our primary GI doc starts his hospital rotation today at 5pm so we should get to see him tomorrow.

A couple more issues for Alysia

2011-09-15T23:27:00.000-06:00

Well, today didn't really bring any answers.

The urine culture is growing something but we don't know exactly what, however it does appear that she is on the correct antibiotic. I am starting to wonder if her bladder is having trouble decompressing as she is urinating but not like she should be and her stomach is becoming distended (which could be from many things).

The blood culture is negative so far and they will continue to watch it. One of the surgeons was in to look at the broviac repair. Not "happy" with how it is but not willing to risk the broviac to try and repair it differently. This afternoon Her broviac seemed to have some clotting issue where they had trouble drawing from it and seemed to come out clotted, then it would draw with no issue but still clotted before it could even get to the lab. They are going to attempted it again in the morning but if they still have issues they will have to call the surgeon to have it looked at.

Her stomach, side, and back still have severe pain. Nausea is still a problem. Today her stomach is distended which only makes things worse. The stomach and side pain, nausea, and distended stomach could be indications that she needs another stint in her common bile duct. Luckily her regular GI doc starts his hospital rotation tomorrow.

Today she started running 100.4 - 100.6 which is concerning since she is on antibiotics and she very rarely runs a "true" fever. They don't know what's going on with this.

They did a Doppler Ultrasound to look at blood flow in the major arteries and veins in her neck and arms, an abdominal ultrasound, and a pelvic ultrasound. We have no results on these yet.

I about flipped out when the day nurse that was leaving said we may be going home tomorrow. NO, she is worse now then she was when I brought her in and we still have no answers regarding the swelling... I talked with the night nurse and she said she hadn't heard anything about that and it doesn't make since to send her home at this time. UGH!!!

Alysia is scared, frustrated, mad....she is upset she doesn't get to do all her activities she had planned this week, not getting to see her friends this week....and that she doesn't even have a good guess at what is going on...

Anyway, I really hope tomorrow brings information.

Thanks for all the support we have gotten.

Alysia was admitted today

2011-09-14T23:20:00.001-06:00

So we get in to see Alysia's GI doc this afternoon. He said that he would have been ok with dealing with her lab work, pain, and nausea on an outpatient basis. However, he was extremely concerned about the swelling in her face. FINALLY, someone taking this seriously. The good thing is that my concerns about the swelling were justified (even with 3 offices telling me they had no clue what it could be and to watch her); the bad part was seeing how concerned he was.

The primary reason for her hospitalization is the swelling and the unknown reason. The secondary reason is the pain and nausea. This isn't to say that the pain and nausea won't be worked on, it's just not the most critical right now. Unfortunately I don't have much to report.
Let's talk pain: The urine culture from last night might be growing something so they are starting her on an antibiotic until they know more. There is a thought that she may have a small Kidney stone that has blocked things and that is why she is getting the infections. There is a thought that an ERCP may need to be done to see if she needs another stint.
Talking about the swelling: They will be doing an ultrasound of her chest tomorrow to see if there is a clot or anything blocking/keeping fluid from draining. There is talk that it could just be that her Thyroid levels have dropped more causing the swelling so they are check blood work again. There was talk about doing an MRI to check her brain.
Alysia's broviac: Since we can't go see the surgeon tomorrow for our appt they are going to have him come see us. They are going to make sure that they are comfortable with the repair that was done last night. They are also drew another blood culture to see if she has a blood infection since there were so many mishaps in the ER.

Honestly everyone is grasping at straws as they have no idea what's going on. Hopefully we will get some answers tomorrow.

Night
Janet

Alysia's 6 hour ER visit

2011-09-14T00:10:00.000-06:00

Well Alysia has a few things going on.

Over the weekend we noticed that her face was looking more and more "chubby" but with no change in calorie intake and the fact it came on so quickly I was more concerned that she was retaining fluid. I started talking with her primary care yesterday about this and he was concerned as well so he had me call her surgeon. Today the surgeon office said they don't think it has anything to do with her central line but to watch it and let them know if primary care feels they need to see her. Today when she saw her primary care he agreed that she is "swollen" but no idea what could be causing it. He doesn't believe it's any of her meds and doesn't believe it's an allergic reaction. So, we will watch it...

Since Saturday/Sunday Alysia has experienced a bit more pain and her nausea had been increasing some. However, today she woke in serious pain and nausea that she couldn't get under control and a low-grade fever. So, that is what brought us to see her primary care doc today. He was very concerned with her coloring (super pale) and the symptoms. He felt there was a good possibility of Kidney Stones or an Appendicitis. He sent us to the ER.

Yep, that's how our 6hr visit started. It was a pretty crazy visit. They had checked Alysia's urine at her primary care's office and it had a small amount of blood in it. The ER urine cultures all came back normal and nothing wrong. They did a CT scan and didn't find anything new but they couldn't get a good look at her appendix but since there was no inflammation they don't feel she had an Appendicitis. However her blood work came back indicating Cholangitis ( http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001335/ ) as her Alkaline Phospates is at 145 (normal 50 - 130), Gamma Glutamyl Transpeptidase is at 82 (normal 11 - 28), and her Lipase is at 242 (normal 23 - 208). The ER doc was ready to admit her and start antibiotics however the on-call GI doc (not one that knows Alysia well at all) said that since she was only running low-grade fever and since her #s weren't that bad, and since she didn't respond to the exam as she should with Cholangitis (never mind it's Alysia who doesn't run high temps with anything and has pain tolerances like nobody should). He said that if they kept her he wouldn't authorize doing anything and they would just watch her lab work. He preferred her to go home and contact the office in the morning. Fine.... Yes, they too thought her face was swollen but not idea what the cause could be. Very concerned about her pale look but no idea what could be causing this either.

But that's not all....so when the tech was injecting the Dye into Alysia's broviac the broviac cracked. This meant they had to do a repair. Ok, not biggy there. Of course it didn't go that easy. The repair kit they had (which said it was the correct size) wasn't allowing the repair. They finally pried it together a little bit and clued it in hopes that it will work. We are to call the surgeon office tomorrow and set up an appt for her to be seen so they can check the repair and see if they are ok with how it is or if they will re-do it.

But NO...that's not all either....so, they doc finally gets to call on the CT results and yes, they have been read but, they can't find the report...ya. They did finally find it but it was just another crazy detour in Alysia's visit.

Anyway, we are home at least for now. I will put calls in to everyone in the morning and go from there. Tonight she is in tears hurting and nauseous; partly from whatever is going on with her body and partly from her stressful afternoon/evening/night.

For now we can use the broviac carefully (since that's her only means of nutrition and hydration), rest with no strenuous activities until she is seen by GI.

UGH!!!

Central Hypothyroidism and Pseudomonas

2011-09-05T19:40:00.000-06:00

Hi all

Hope you are having a safe Labor Day weekend. I was just touching base to let you know a couple new things that came up as of Friday.

1) Friday the urine culture finally came back and showed Pseudomonas so they finally put her on Cipro.

2) Friday Alysia's Endocrinologist called and Alysia has Central Hypothyroidism. They started her on Synthroid and we will see them again in 6 weeks to talk about it more and I'm sure we will check levels again as well.
***A non-immune related type of hypothyroidism, that is less common, called “Central Hypothyroidism”. With Central Hypothyroidism, the low functioning thyroid gland (hypothyroidism) is a result of inadequate communication between the, system of endocrine glands, that work together in regulating thyroid function. The hypothalamus and pituitary glands are located in the brain and are the endocrine glands that send signals via hormones, to other glands in the body, including the adrenals and the thyroid. The hypothalamus is the first gland in the chain of command and sends a hormone to the pituitary gland, to signal it to release a hormone of its own that will afterward be sent to the thyroid gland, to regulate thyroid hormone production. When something goes wrong within this system of glands whose end-purpose is regulating thyroid function, it can cause the thyroid to release inadequate amounts of hormone, resulting in hypothyroidism
http://www.bellaonline.com/articles/art24276.asp

Sunday we started seeing improvement in how she fees and it was just in time since she had tickets to see Selena Gomez. We times all her meds just right so she would be able to get through it. She had a good time and was very excited to see Selena up close and hear her sing some of her favorite songs. Today she is paying for it a bit but it was worth it and she got to do something she had her mind set on for months which means a lot. I am hoping that after this week she can be back to the "normal" Alysia and we will be out doing more again.

Talk with you later
Janet

What I Would Tell You

2011-09-02T12:36:00.000-06:00

A friend had posted this and for us it rings true on almost ever point. I have never heard it all put so well and I had to share. Alysia doesn't have cerebral palsy but I think you can see how it relates.

Anyway, here it is:

http://www.whatiwouldtellyou.com/

What I Would Tell You

I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention, as I have grown accustomed to the curious eyes of onlookers. Our daughter was born 7 ½ years ago and after an abrupt lack of oxygen at birth, she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to — they just didn’t unfold in the way we had imagined or planned.

I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day ~ the car ride home. Having cerebral palsy is the least of her worries but this condition can turn a car seat into a torture chamber.

I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume that the man sitting next to you, looking equally tired and shocked, was your husband.

I made my way toward the doors and as I passed you, our eyes met and I smiled at you. You smiled back and for a moment I knew that you knew that I understood.

If I could, I would tell you although you might not believe it right now, you will be okay. I would tell you to dig deep within yourself because you will find the strength and resilience somehow and it will surprise you. I would tell you to honour your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.

I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.

I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all of the services and resources available. Find someone who can learn how to care for your child so that you can have breaks and so you and your partner can go on dates… even little ones like a twenty minute stroll outside holding hands, sharing wine on the deck or even catching a movie.

I would tell you that you know your child best of all and no matter what you are told by the doctors and other professionals who will be a part of your life, YOU know the answers. You will teach them about your child. At times you will question the validity of your intuition but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.

I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so that you can stay healthy in your mind and spirit.

I would tell you to seek out other mothers like yourself. This is, indeed, the road less travelled and you will feel very alone along the way especially in the company of healthy children and their parents. Yes, you will feel very isolated but know that we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.

I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals, and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information.

I would tell you that this isn’t an easy life. It is tough: there is no doubt about it but you are very capable and the rewards are great. You may never see your child graduate from university, walk down the aisle or give birth to your grandchildren but you will feel pure joy when your child laughs for the first time at the age of 3 years and 8 months. You will celebrate the moment when you connect with your non-verbal child. You will call your spouse at work to tell him that she has gained 4oz. because weight gain is always a struggle with our children.

I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.

I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.

I would tell you that you might find yourself staring death in the face during close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms and although you might make decisions to not resuscitate in the event of a cardiac arrest, when the moment arises, you will panic to think that it could all come to an end. And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing.

I would tell you that others will not get it. They can’t. This is a very unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people — the cashier at the grocery store or your insurance broker or even your hair stylist — will say stupid things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bullshit.

I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.

I would tell you that grief will creep up on you after years have passed and you least expect it like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.

I would tell you that you will recognize her because she is you from 7 ½ years ago. And you will want to run to her and hug her and tell her that everything will be okay. You will want to save her from the pain and the hardship and the unknown.

But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you smile at them and walk by as they have their own path to travel and it will be different than yours. It may be longer or shorter. It may be more or less complicated.

I would tell you that her searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.

Julie Keon
June 29th 2011

Alysia's Roller Coaster

2011-08-31T14:54:00.001-06:00

You know it feels like we are on a roller coaster these days that has been primarily the up-hill climb, we are hoping for some down-hill action soon.

So, I believe the last update I sent was just after her last block. That would have been 8/23/2011 and they did Trigger Point Injections from the Scapula to the mid-back. It has helped a lot and she is requiring far less extra pain medicine.

I believed I had updated you on her hemoglobin and it was extremely low for about 3 months but Monday lab work showed it is back within normal range. She is still on 660mg of Fer-in-sol, but whatever it takes is just fine.

Unfortunately Alysia still has felt really crummy. Yesterday I took her in to see her primary care doc and it turns out she has a urinary tract infection. It is likely because she has been sick for so long and her body just can't deal. They have started her on Cephalexin (625mg 3x/day) and are sending for a culture to see exactly what bug grows. Now, I would be willing to bet that it comes back as Pseudomonas. Unfortunately they won't treat her as if it's Pseudomonas (even with history on our side) until it comes back confirmed. So, Thursday we will likely get a call that they have to change her antibiotic to Cipro...

Today Alysia finally got in to see her Endocrinologist (we had to cancel her last 2 appointments due to nerve blocks) and we got the results from the test done 7/8/2011. IT'S OFFICIAL THAT ALYSIA WILL NEVER NEED HORMONE SHOTS AGAIN!!!! Unfortunately her Thyroid levels are low (her thyroid has been checked every 6 months since 8/2005 as it's not uncommon to have thyroid issues with hormone growth medicine); and they drew more blood to run tests to confirm it's low and to figure out the cause. He really didn't give the impression that he thought it was a fluke... Once the results come back he will give us a call. At worst she will need to take medication and honestly that is fine as long as it's not shots!!

Anyway, we are hoping that tomorrow will be the start to our down-hill ride on this crazy roller coaster.

Thanks for all the understand and support we have gotten lately.

Janet.

8/23/2011 Nerve Block

2011-08-23T19:36:00.001-06:00

Alysia did great at her nerve block. It was a long afternoon as they ran about an hour or so late, but with the help of Aunt Jen we kept her fairly entertained. I didn't get to talk with her doc much after the procedure as she had a kiddo that wasn't recovering as well as Alysia was. I will touch base with the clinic tomorrow to get better details. The nurse wasn't able to tell me exactly what kind of injections (an actual nerve block or were they muscle injections) or the exact locations they were done. All we know is that they did a lot of injections in her back.

Tonight she is hurting and nausea is hitting but hopefully in about 5 days she will start seeing some better improvement.

Fingers Crossed
Janet

Alysia's pain

2011-08-21T12:15:00.000-06:00

Alysia has been having a VERY rough time. She has been in extreme pain for too long. The last Nerve Block and muscle injections focused on Migraines and Shoulders and has helped those areas. The problem is she has too many back issues that need a Nerve Block and they just can't get to them fast enough.

Last week she hit a whole new pain level, was asking to go to the ER and to be hospitalized. She said that her pain level on a scale of 1 - 10 was now at an 11. Please understand that when Alysia is in really bad shape she will still usually say her pain level is a 9 at most. She is pale as can be and her mental health is declining quickly. Tuesday I was able to talk with the pain clinic and they were great. There is about a 4inch area of her back that is causing this extreme pain from just about the bottom of the shoulder blades and down 4 inches. Dr. Slover said she knew the exact area that Alysia is talking about and she felt it did need a Nerve Block ASAP so they actually were able to move up her Nerve Block to this coming Tuesday 8/23/2011. It is currently set for the afternoon but they will call me Monday to verify the time.

Thursday we tried to adjust her medication schedule to help with the pain but it wasn't doing anything for her. Friday they added a medication called Indomethacin which has helped some but it wipes her out - which of course ticks her off as she hates sleeping during the day. Right now she is on 4 pain medication plus Tylenol, pain cream, and Lidocaine patches.

We are trying to focus on things to come. She wants to be able to get back to dance class, she has school co-op classes she wants to attend, and she want's to start gymnastics, In September she has tickets to see Selena Gomez. So, she is dealing with being scared that the Nerve Block isn't going to do what she needs and that once again she will have to cancel things.

Fingers Crossed that this coming week brings a new start. After the Nerve Block she typically has severe muscle spasms for a few days and then hopefully she will be able to tell a huge difference.

Thanks
Janet

Alysia update

2011-08-08T16:39:00.001-06:00

I can't believe it's been 3 weeks since I updated everyone on Alysia, it feels like much longer...

7/26/2011 - Alysia had a Migraine Nerve Block and Migraine Trigger Point Injections and they help a lot with her headaches and migraines, and it loosened up her shoulders a ton. However it did nothing for her upper/middle back. We were hoping that they would be able to do some of her upper back as well but her shoulders were in too bad of shape and they used all of the "allow" medicine on them.
Last Tuesday 8/2/2011 I called the pain clinic as Alysia is still miserable. They called in Voltaren Gel 1% for her to use 3 - 4 times a day during the daytime to help with inflammation and pain. They have her using Lidoderm Lidocaine 5% patch for 12 hours over night to help with pain. We will see the pain clinic 8/22/2011, and they have scheduled her for another Nerve Block 9/6/2011.

8/1/2011 - Alysia saw Dr. Barrios and he made no changes at that time. She lost a little weight but it was like 6oz so we aren't going to worry about that. For some reason they aren't getting the lab work results that Alysia has done every 2 weeks and I was talking to him about my concern of her Hemoglobin being so low for so long. Lab work was due again the next day so he wanted to see what that showed and then would decide what to do if anything. No other changes, just lots of talking to Alysia about her being a main person in decision and that we won't be trying any kind of food or formula until everyone is comfortable with it.

Alysia has continued to have extremely low Hemoglobin (10.5 6/20/2011, 9.7 7/5/2011, 9.3 7/18/2011, and 9.7 8/2/2011) here is a website you can read more: http://www.mayoclinic.com/health/low-hemoglobin/MY01183.
Last Friday 8/5/2011 they put her on Ferrous Sulfate (Fer-in-Sol) 660mg 2x/day. Hopefully this will help with her tired, tires easy, loss of balance, coloring, and her hair following out (not a lot but it's noticeable to Alysia and driving her crazy.) Fingers crossed!

8/3/2011 - Alysia saw her Orthopedic PA-C. Appears no progression in in Scoliosis. It is felt that Alysia needs to continue with the pain clinic and dance. She is to see Dr. Shay Bess in 1 year as Dr. Shasta will no longer be there.
- - - She has an extra Vertebra - L6 which is fused to her tailbone, vertebra L4 & L5 are fused together, vertebra L2 & L3 are fused together, she has 2 ribs that are also partially fused
- - - - Her spine is adjusting to help with the Scoliosis so now instead of 2 curves she now has 3. The top curve is 9.8 (closest to her head), the middle curve is 6.1, and the bottom curve is 7.7 (closest to her pelvic bone).

8/8/2011 - Alysia saw her Genetic Doc. It was a very rough visit as it's never easy to sit and hear all the "odd" things that you have going on with your body. The doc is great and does a really good job of not making it about Alysia but more about her family. However, she is already hurting so it made everything even more emotional. They are more hopeful to find a better diagnosis for Alysia as tests have become even better and they are able to look at genes even more then in 2006 (we we last had her checked). They are going to check 2 things:
1) TBx5 (gene) http://en.wikipedia.org/wiki/TBX5_(gene). This will tell us if she has Holt-Oram Syndrome http://en.wikipedia.org/wiki/Holt-Oram_syndrome which they say could easily fit with Alysia especially given her left hand/thumb/arm issues, her small feet, her cognitive functioning, and her heart issues.
2) Cornelia de Lange syndrome testing http://www.medicalhomeportal.org/diagnoses-and-conditions/cornelia-de-lange-syndrome/initial-diagnosis
which when reading about this it could easily be Alysia as well. http://www.medicalhomeportal.org/diagnoses-and-conditions/cornelia-de-lange-syndrome/treatment-and-management.
We will go in sometime this week - thinking Friday late morning when it may be less busy to get blood draw for the testing. It will take about 2 months before we get results.

Today she is complaining about her ears again, and the past few days she has ran a low-grade fever (even with being on Advil and Tylenol). I will call her primary care in the morning to see about getting her in.

Hope you all are doing well
Janet

Alysia's crazy July (and a bit about June as well)

2011-07-26T16:43:00.004-06:00

Hello

Never time to settle into a good routine before something changes around here. We have had a bit of a crazy month and have been trying to tread water as best we could. Here is some of the scoop:

Friday 7/8/2011 - Alysia went to the Endocrinologist for a growth hormone test. 4 hours of watching movies and Alysia trying to stay somewhat comfortable. Luckily her friend Amy came with us and was VERY entertaining (check out the picture above on the right). We go back in September to get the results (we were going in 7/27 but with the nerve block on the 26th that wasn't going to work).

Monday 7/11/2011 - Alysia was seen by her pain doc who was shocked how tight her upper back, shoulders, and neck were. She said it was a big difference just in the month since she had seen her. She wasn't surprised to hear Alysia was having more headaches and getting some migraines. Unfortunately the doc was scheduled for 1 1/2 weeks vacation so there was no way to get Alysia in sooner for another nerve block.
Monday 7/11/2011 - Alysia also saw her Pain Psych doc. Good thing they get along as Alysia was already in too much pain so it was a rougher visit. The doc is great and always comments on how great it is that Alysia finds things to look forward to. She started to give her some more stretches to help her shoulders, neck, and head relax and Alysia stood up and said "I'm done" and walked out of the exam room. Now she said it nicely and didn't make a scene so I call that pretty good. The Psych doc looked at me and said "I just love her". Anyway we see both docs the end of August.

7/12/2011 - Alysia saw her regular Psych doc and the appointment went great. She was happy that the pain doc had added Lamictal (Lamotrigine) to Alysia's long list of meds as it is a good mood stabilizer (in addition to a nerve pain medication) and will just boost the other meds Alysia is already on. She also was very happy Alysia was finding things to keep her busy even when she can't dance and that she had things she was looking forward to. We see her again the end of September (should have been beginning of September but no openings).

7/12/2011 - Alysia ended up having severe ear pain and we took her in to see her primary care doc...well, a doc in his office. Turned out she had 2 outer ear infections so they put her on ear drops. Sucks when you can get outer ear infections and you don't even get to go swimming... Anyway, both seem to be doing better now.

7/26/2011 - Today Alysia had a Migraine Nerve Block which is injections around the nerves of her forehead, temples, above the eyebrows, and the top of her head. She also had Migraine trigger point injections which is into some of the muscles in her shoulders, around shoulder blades, and down the upper part of her back. She is currently having issues with nausea and muscle spasms but other than that doing well. Hopefully in 2 - 3 days that will all calm down and she will see some real relief from the injections.

Alysia has been having problems with her hemoglobin as well. On 6/20/2011 it dropped to 10.5 (should be 12 - 16). 7/5/2011 it dropped to 9.7 and 7/18/2011 it fell to 9.3. Nobody knows what's going on but we see her Gastroenterologist on Monday 8/1/2011.

Now, June and July haven't been all bad as she had some wonderful things happen as well:
6/20/2011 - her friend Amy stayed the night

6/24/2011 - Alysia got to participate in the Miss Colorado Pageant. She got to meet some of the contestants and walk the stage with Miranda (Miss Centennial). It was a blast, exhausting but very worth it. Check out the picture at the top on the left.

7/7/2011 - her friend Amy stayed the night

7/15/2011 at midnight - Alysia was one of the 1st to see Harry Potter the Deathly Hollows part 2. We went with her Aunt Jen, Uncle Davin, Anya, Maya, Lyddeth, and Tiernan. It was packed!!! But she got to do it and that was a goal for a long time.

Any way, that's the scoop on Alysia. Hopefully by next Tuesday she will be back to dance and getting back to seeing her friends.

Thanks for all the support we have gotten lately. It means a lot to us.

Janet

Alysia's week

2011-06-10T11:07:00.000-06:00

Hi all

It's been a rough week and exhaustion has set in!

Sunday a dark substance was leaking from around Alysia G-Button. If you recall a dark substance was found in her J-Tube back around 5/26/2011, so this is the 2nd time in 3 weeks and now the J-tube is out so we know that's not it...
Monday I called GI and they wanted to see her that afternoon. You can imagine Alysia was very upset as being told to come in when there is something odd going on isnt' typically a great sign. GI feels it was old blood but had no explanation as to why and from where. Due to this as well as Alysia's continued nausea and pain he scheduled her for an Upper Endoscopy the next morning.
Tuesday Alysia was again worried as she knows things don't typically get scheduled this quickly and it was at a location she has never been...UGH! It went fine, there was nothing obvious and no ulcers. There was inflammation and irritation in the stomach lining around the area of the G-Button. Really this wasn't surprising to me, with her anatomy they typically see this when they do any kind of scope on her. However, GI did decide to take a biopsy just to be safe.
Thursday I got a call from GI that they have the biopsy results and he wants to see her Monday at 1pm.

Sunday Alysia's broviac started being a bit difficult drawing back blood. Now, since this is her life line right now we are working hard to keep it very healthy.
By Tuesday it wouldn't draw back at all. Figure it may be a clot as Alysia is prone to them when she has broviacs. I talked with the surgeon's office and they wanted her to be at the hospital the next day for an infusion of TPA (medication to help break up clots).
Wednesday after she was done with her TPN (IV nutrition) we went to the hospital. Alysia was very scared that they wouldn't get it to work and that she would have to be admitted. I reassured her that that isn't how things work but she didn't have much faith in my words, anxiety was too high. Well, of course it drew back just fine....stupid broviac! However, Wednesday night it wouldn't draw again.
Thursday when I disconnected her TPN I attempted drawing back again and it worked...so, it will draw after it's had something running through it for a period of time but if it's been sitting too long with nothing running through it it won't draw. UGH!!! I will have to touch base with the surgeon's office to let them know and make sure I don't need to do anything . Stupid Broviac!!!

Thursday Alysia had 2 appointments.
Pain Clinic Psych doc - LOVE HER!! She is so good with Alysia. They talked for about 45 min going over all that has happened this past month.
Pain Clinic Physician - WOW! Ok, so Alysia is a mess. I talked with her to see if there is anything she can help with regarding Alysia stomach and side pain since we now know this is Alysia's new "normal". She examined Alysia (one of the few that can without hurting her) and said that she is SUPER tight in the upper back and neck (Alysia had already been asking for a nerve block for her upper back), in her side - especially the right, and in her stomach. She increased Alysia's Methadone, increased her Boclofen, and added a new medication that is a nerve pain med (this should be a huge help with the back, stomach, and said pain). She also agreed with Alysia that a nerve black would be helpful so they will work on setting that up as well.

Today - Friday - NO APPOINTMENTS and hopefully no surprises.

Hope you all have a great weekend
Janet

Life is about change and adjusting to change

2011-06-04T15:18:00.000-06:00

Hi all,

It has been an emotional week around the house. Not because there was something going on, but because we continue to try and find the new “normal” for us and to adjust to the changes that have been happening. It’s not an easy thing to digest all that has been going on and find a “spin” to put on it so that we can begin to dig ourselves out of the emotions that have taken over.

I think Thursday was a magical day for us. We had another talk, one of many this past week, and we both found ourselves realizing that nothing has really changed. Yes, we now know that what we have always known was going to happen has begun. Alysia’s digestive system is shutting down. Ok….so she goes on TPN, has a broviac….in many ways that makes life better. No more pokes for lab work and tests. No more planning days and activities around feeding schedules. No more counting calories and worrying about weight and hydration… BONUS!!!

You see, we realized that nothing is different. We will continue to live just as we always have. Alysia has been raised to do as much as she can in life and modify/adjust when needed but not to give up things she loves. Yes, she has more bad days and times so we modify her schedule so that she can focus on the things that keep her going and give her the happiest times we can. She has always lived for dance and that hasn’t changed. She is putting everything she has into getting ready for her dance show in a couple weeks. Yes, this means she is missing out on some other things but it’s allowing her to complete her goal – the goal that she has had for the past 5 months – to be able to dance in the dance show.

Things aren’t better. Things are more critical than they have been in a very long time, Alysia hurts all the time and is nauseous most of the time, and she can’t digest things in a normal fashion any more. HOWEVER, there is no time frame for how this will all progress and we will not be changing anything in our lives because we have always lived for every day that we have Alysia. We will continue to put band aids on band aids, and keep her feeling as good as possible so that she can have the best quality of life we can give her.

For now we ask that everyone be understanding and to follow Alysia’s lead in terms of what she is up for. We have never focused on the negatives, and we will continue to focus on the positives as that is what counts most.

We love you all!

Janet

No more Jejunostomy-Gastrostomy Tube

2011-05-28T10:22:00.000-06:00

Alysia has had a bit of a rougher week. Sunday we noticed that she had a dark substance in the Jejunostomy Tube so I flushed it with 30cc of water (1 ounce) and it cleared but it caused Alysia to become extremely nauseous again and her pain returned. Unfortunately it has continued all week. Wednesday evening we noticed a dark substance in her Jejunostomy Tube again so this time I decided to try draining it (since flushing had such a bad reaction). We got out some dark brown substance but then the medicine we had just given her through her Gastrostomy Tube began to come out of the Jejunostomy Tube...no good! Yesterday I was able to finally reach her GI doc and explained what happened and that it appears the Jejunostomy Tube was no longer in the Duodenal (upper part of the intestine) and was sitting in her stomach. I requested that it be removed to see if that would help with Alysia's sudden return of pain and nausea and they agreed. So, I removed the Gastrostomy-Jejunostomy Tube yesterday evening. It was very traumatic for Alysia and she was super scared but she did great. I put in a new Gastrostomy Tube (like she has had since she was an infant) so now we just wait to see if she gets any relief. She has been very frustrated since she felt so good last Thursday - Saturday. This week she had to cancel friends visiting and didn't get to participate in the co-op class. She did go to dance but didn't do it "full out" like she had last week - but at least she went. We are crossing our fingers for a calm weekend and hope she gets better so that she can at least attend her Uncle's birthday party Sunday.

Have a safe holiday weekend!
Janet

A genuine smile and laugh can make all the difference

2011-05-21T18:19:00.001-06:00

We have had a crazy week, but not a bad one. Here is kinda how it unfolded:

Monday - She saw her primary care doc since she just got out of the hospital and had the broviac insertion. All was good except Alysia was feeling pretty crummy, broviac site was hurting a lot, sore throat, cough, and (of course) a fever of 100.3. Now, we all know this isn't normal for Alysia as she can have a blood infection (which we now have to watch her for due to her having a broviac again). Unfortunately Alysia often comes out of the hospital with a virus of one kind or another, and her primary care doc agreed that's likely what it was - but we would have to watch her closely for a blood infection.

Monday - Alysia went to solo dance practice. It was hard for her to go because she was hurting from the multiple tries of getting the broviac placed but really wanted to go because she has had to miss so much. Thanks to her wonderful teacher (thanks Michelle) she came out feeling great about herself and her dance.

Tuesday - She met her home health care nurse, she is very nice and Alysia did well with her. She will come out weekly to draw labs and make sure Alysia is doing ok. The nurse took things pretty well as I have a few things that I know work best for Alysia and am pretty vocal since I did all this myself for 10 years. So, we will typically see her on Tuesday 2:30 - 3:30.

Tuesday - Alysia also saw her Psych doc. I did a lot of talking to Alysia before the appointment reminding her why we go and the importance of actually communicating with her doc....it seemed to help. The doc was happy that Alysia hadn't had any major meltdowns or attempts of self harm during all this medical stuff. She and Alysia talked and they decided that a slight increase in her Remeron (depression med) might be the trick to getting over the next bump.

Wednesday - Alysia saw her GI doc. This was a hard appointment. We hadn't gotten to see him with all that had been going on but he was in constant contact with the docs covering the hospital. Alysia was very clear going into the appointment that she had no intent on eating again (ever) and would never live like she had to these past months. When the doc came in he went right over to her and gave her the biggest hug I have seen, the look he gave me was pure sadness and overwhelming emotions. He wants to let her body rest and just get some strength back from all that she's been through. He hopes that at some point she will feel like attempting feed again but understands completely that she doesn't and he has no plans of pushing her to do so. There is no explanation for what happened; even back in 2003 we knew that eventually she wasas she going to have to have reconstructive surgery so at least we knew what caused her body to start shutting down then. He said that now is the time to truly do what Alysia needs for her to feel as good as possible and as happy as possible - it may not always be the ideal or desired paths (from a medical standpoint) but her quality of life is what has to be the driving force behind what is done. THANK GOODNESS!!!!!!! He understood where we were, where Alysia was, even before we walked through the door.

Thursday - Alysia was able to go to her hip hop dance class, she hasn't been able to do this in months. Alysia was determined to go for the whole class which she hasn't been able to do in over a year. She modified, but she did it. More importantly this was the magical day that Alysia was truly happy for the 1st time in ages (thank you Roni, Stephanie, Tory, Savannah, and Allie). She had this amazing smile on her face, she was laughing with her friends and she had that wonderful twinkle of pure joy in her eyes. This is the point I knew we were finally on the right path and doing what she needed.

Friday - She was in the mood to do something and it had to be with a friend. So, we met up with a wonderful family (thank you Maura, Rhianna, and Michael) and saw Soul Suffer. She hurt a bit after sitting through the movie but not too bad and she had a wonderful time. The last time we attempted seeing Soul Suffer she couldn't sit through it and we ended up leaving part way through the movie and she was in extreme pain.

Today (Saturday) - Alysia was able to support her friends and go watch her old cheer team compete. Alysia was really worried about going as the bleachers really hurt her back. They told us what time the teams were estimated to compete so that we could time it just about right and it worked great! Alysia got amazing hugs, presents, and flowers from some wonderfully supporting people (thank you Lynn, Amy, Kaya, Mark, Evan, Hannah, Kim, Dawn, and Coach Holly). Alysia was cheering and clapping. It was night that she finally was able to show support for people that support her. Right after the 2 teams performed we left - she was stiff and hurting a bit but in a wonderful mood.

So, I know some don't understand but things are really going much better now that she is on the TPN and that there is only medication going into her stomach. She is finally enjoying life more and being able to live and do the things she wants to. Even if we have to leave events and adjust things so that she comes a bit late it's worth it because she is participating and getting to be included in activities again. Even if it's finding that good day and dropping everything so that she can enjoy something while she has the energy and desire, that's ok - that is worth it just to see the smiles, laughs and her having something joyful to get her through whatever hill she has next to overcome.

Hope you all have a great weekend
Janet

Alysia at a glance

2011-05-15T13:10:00.003-06:00

Newborn Evaluation: diagnosed with VACTERL Association (V-vertebral,
A-anorectal, C-cardia, T-tracheal, E-esophageal, R-renal, L-limbs.) Alysia had
fused L-3 and L-4 vertebral bodies, Tracheal-esophageal Fistula (TEF), Duodenal
atresia, Apple Peel Mesentery, Large Parent Ductus Arteriosus (PDA), and an
Atrial Septa Defect (ASD).

***7/28/08***Most Current Evaluation finds: diagnosed with VACTERL Association (V-vertebral, A-anorectal, C-cardia, T-tracheal, E-esophageal, R-renal, L-limbs.) Alysia has Multiple Congenital Anomalies (MCA): characteristic facial features, TEF, FI anomalies, Vertebral anomalies, congenital heart defect, and hypoplastic left thumb. See below under “Genetics” for further information.

Mental Health - IQ: Full Scale score 57, 0.2 percentile, Extremely Low Range of cognitive functioning
- scares easily
- talk to her before doing anything
- Extreme Depression and Anxiety
- Abilify, Remeron, and Klonopin

Endocrinology - Idiopathic Short Stature (ISS)

Skeletal
- 1/25/2010 - she had Lumbar Hemilaminectomy and a Tethered Cord Release
- Chiari Malformation
- Scoliosis
- She has an extra Vertebra - L6 which is fused to her tailbone, vertebra L4 & L5 are fused together, vertebra L2 & L3 are fused together, she has 2 ribs that are also partially fused
- Her spine is adjusting to help with the Scoliosis so now instead of 2 curves she now has 3. The top curve is 9.8 (closest to her head), the middle curve is 6.1, and the bottom curve is 7.7 (closest to her pelvic bone).
- Pain Control
- Methadone and Baclofen
- 2/4/2011 – Medial Branch Nerve Block bilateral on lower back consisting of 6 injections; 3 on each side covering L3 and down.
- 3/22/2011 - Medial Branch Nerve Block bilateral on lower back consisting of 8 injections; 4 on each side covering T12 - L3.

Heart- Born with ASD, PDA, and PPHN – all corrected on their own
- During the hospitalization March 13, 2003 – April 17th, 2003 - Alysia’s heart stopped 3 times due to stress after being extibated and failing to breathe. At the last episode she received chest compressions for 3 – 5 minutes and was then given medication to help restart the heart and was also re-intibated.

Trachea and Lungs- from birth Alysia had “dying spells” that required oxygen, stimulation, and occasionally mask-bagging with the Laerdal (these were also complicated by Alysia’s temporarily ‘paralyzed’ left vocal cord.)
- 3/26/1996 diagnosed with severe mid-tracheal malasia, areas of extra or floppy thick tracheal tissue, a tortuous left main-stem, and a very early take off of the right upper lobe bronchus (almost at the trachea.)
- 4/17/96 - tracheotomy
- 8/13/97 - decanulized
- During the hospitalization of March 13, 2003, - April 17, 2003,
- 3/16/03 - Alysia was unable to be extubated after an Esophageal Dilation
and an attempted ERCP.
- 3/22/03 - they attempted to extabate Alysia again and she
immediately failed the attempted and was re-intibated.
- 3/26/03 - a flexible naseloscopy was done and they pulled out a large
tissue/blood clot that they though may have been causing her trouble
breathing and not able to be extibated.
- 3/26/03 - Another attempt to extubate was made; she struggled for about 2
hours and then stopped breathing which caused her heart to stop, she was re-
intibated again and the feeling was that there was another blood clot
causing her to have trouble.
- 3/31/03 - she was taken to the OR where a Larynoscopy and Bronchoscopy was
done. They found lots of sores that has scabbed over and felt that the
scabs were falling off and blocking her airway. He cleaned them off and
they were able to extubate her; she did require steroid nebs and heliox (30%
oxygen, 70% helium) by mask to keep her extubated.
- 4/1/03 - she was able to switch to oxygen.
- 12/23/2010 - Pneumonia
- 12/28/2010 - Chest x-ray shows that the Pneumonia is gone but there is severe inflammation around the ribs that is likely causing the continued pain when breathing.

Gynecological- 3/2/2010 Started 1st period
- 12/3/2010 – CT Scan showed large ovarian cyst on right ovary (4cm = 1.6inch).

Gastrointestinal
- 11/15/1995- Repair of Duodenal Atresia, and Apple Peel Mesentary. Gastrostomy tube insertion.
- 1/24/1996 – Esophageal Repair
- 2/21/1996 – Nissen Fundoplication
- 4/8/2003 - exploratory open surgery and was able to reconstruct the biliary. He attached the gallbladder to the intestine allowing the bile to drain that way; he also discovered and removed an internal hernia.
- 2/21/09 - Alysia came down with Pancreatitis.
- 4/27/2011 It was found that Alysia’s motility of the intestines and bowel had slowed even more than previously noted.
- 4/28/2011 – Gastrostomy-Jejunostomy Tube (Jejunostomy – only able to insert it to the Duodenal
- 5/13/2011 – Broviac Catheter Insertion (previously had 11 other broviac/med ports 1996 – 2006)
- Numerous Esophageal dilations
- Several stint placements/removals in the common bile duct

Bladder and Kidneys - 4/11/2008 – Bilateral DeFlux for Vesicoureteral Reflux (VUR) – Left reflux grade 2, Right reflux grade 3-4
- 8/15/2008 – Bilateral DeFlux for Vesicoureteral Reflux (VUR) – Left reflux grade 2, Right reflux grade 1
- 12/10/08 - Bladder became distended and wasn’t decompressing. They catheterized her and removed over 600cc’s of urine. It turned out that Alysia had Pseudomonas. It was felt that the bladder problems are due to the GI pain and Morphine. That the infection was due to her bladder not being able to de-compress.
- 4/11/2011 – Alysia had Pseudomonas and it was felt that the bladder infection was due to GI problems and hydration problems.

Audiology- consistent with normal hearing at 250-6000Hz with borderline normal hearing at 8000Hz bilaterally. In the right ear DPOAE present at 1500-7000Hz (low amplitude at 6000 and 7000Hz) and absent at 8500-10,000Hz; the left ear couldn’t be evaluated due to inability to calibrate stimulus. The present OAEs suggest normal chochlear outer hair cell function. The absent OAEs are consistent with some degree of hearing loss.

Ophthalmology- 7/18/06 - found that her optical nerve is elevated and is concerned that there may be pressure on the brain
- 9/15/2010 - Optic nerve appears normal now.

We were told Alysia wouldn’t live past 8 years old; on November 15, 2010, Alysia turned 15 years old and we continue to celebrate Alysia and her inspiring life. She started her life kicking and screaming to live and hasn't stopped since. Currently she strugglings with balancing the things she loves with what her body allows her to do, and with the fact she can’t do as much of the things that she loves.

Alysia Fun Facts:Hospitalized 1st 6 ½ months of her life and since then Alysia has:
*been hospitalized 37 times
*had 45 blood infections
*had 8 bouts of Cholangitis
*had 30 Esophageal Dilations
*Been put under general anesthesia for 79 times
*Had 104 surgeries/procedures.

Alysia has shown me as well as many others how life should be lived. Doing everything in your power to do as much as you can and modifying things enough so that you can do them. That even when things are crazy and not going how you would like or expect to look for a positive and run with it. Alysia struggles at times with keeping a positive outlook but continues to do her best.

Alysia is home!

2011-05-14T13:38:00.001-06:00

We are home from the hospital!!!!

Alysia's broviac (central line) http://www.cpmc.org/advanced/pediatrics/patients/topics/central-lines.html is on the left hand side of her chest. She will be on TPN (total parenteral nutrition) http://en.wikipedia.org/wiki/Parenteral_nutrition for 16 hours a day; I'm thinking 8:30pm - 12:30pm so that she can be off for dance and things.

My understanding is that she will be off all food and formula for at least a month to see if her system just needs to rest but we will see - Alysia says she is NEVER eating again (don't blame her the past few months have been really bad.)

So, home care will be out this evening with supplies and the nurse has to come out to go over general information with us. Sounds like things have been simplified since I was doing things 6 years ago... She has to see her primary care next week so I will call and see when we can get in, Tuesday she sees her Psych doc, and Wednesday she sees her GI doc.

Thanks again for the support we have received. Hope you all are having a wonderful weekend.
Janet

Alsyia has her new broviac today!

2011-05-13T21:49:00.001-06:00

Thank you all for the prayers, positive thoughts, and wonderful support we got. Alysia is in her room at the hospital and should be home tomorrow.

They had a little trouble getting the broviac in (not really a surprise) - they tried on the left side of her chest and couldn't get it, they switched to the right side and thought they had it...but no, so they went back to the left and got it in. She is already showing some lovely bruising and is pretty sore from it all. HOWEVER...it works great.

As long as the night goes well and the lab work in the morning isn't out of control she will be home. She will be on TPN (IV nutrition) for either 14 or 16 hours a day so at least I can arrange some time off during the day for her to be free.

Hope you all have a wonderful weekend!
Janet

Alysia will be getting a Broviac

2011-05-09T15:40:00.003-06:00

Just got off the phone with the GI doc. Alysia's pain and nausea is increasing again; every time you put anything in her tummy (medicine, water, etc) she starts to leak around her GJ-Tube and there really isn't any reason why it should since that's all that is going into the stomach. They are now thinking they will not be able to get past due Duodenal to get the "J" tube placed where it really should be. They feel that we need to give her bowel a complete rest for at least a month so that means back on TPN. GI is calling her surgeon to see when he will do this so we are on hold until then. I just hope this will make her feel better.

It seems that some are a bit confused on Alysia's actual health at this time. When we admitted Alysia 2 weeks ago they weren't sure they were going to be able to pull her out of the downward spiral her body was taking. When they released her from the hospital she was actually at a place where most people would be being admitted. They released her because they had nothing more they could do as they couldn't figure out what was going on and her mental health was taking a hard hit so they sent her home to be more comfortable while everyone continues to try and figure this mess out.

Alysia is an amazing girl and she fakes feeling better than she does for as long as she can and then hits rock bottom. So, she will continue to do all that she can and we will continue to encourage this but it's important for everyone to remember what is really going on.

I'm attaching 2 pictures so that you can see some of what I have been talking about. The one in the purple outfit was taken 1/18/2011, the one with the IV pull was taken 5/1/2011 (after gaining back about 6 lbs from day she was admitted).

I will keep in contact as much as possible
Janet

Alysia

2011-05-06T23:10:00.000-06:00

I wanted to do a quick update so that you all would know that Alysia is still home and we had no ER visits this week - YES!!!!!

It's been a struggle finding ways for her to look at things with a positive view as she's old enough to know she has taken a major set back. However, we have created a very stylish carrier for her feeding pump - turned a little backpack into a High School Musical purse. Of course, now she isn't understanding that people are staring at her because she has a fun purse and not because she has a pump....UGH!

We saw her primary care doc Tuesday and she had 2 appointments in the pain clinic Thursday. It's hard to watch the doc's faces as they taken in the information as what the month has brought.

Pain Clinic is checking her Thyroid and Iron as they were a bit concerned with her last lab work done there and given what happened they wanted to recheck it.
I talked a lot to the pain clinic docs about the slack I've been getting about having Alysia still on Methadone. They explained that unfortunately the professionals are show their ignorance when talking to us in this manor.
It's the 1st time in a while that we have had a sit down talk about the importance of quality of life especially with all she has going on right now. Basically she said that I'm doing right by my daughter. That Alysia does fall into "adult" guidelines now as she is done growing and 15yrs old. She reminded me that Alysia is only getting 15mg/day of methadone and that there are adults that are on 200mg/day. She of course is open to doing whatever we want but since the Methadone is working and she isn't requiring a high dose she would suggest changing it.
She said that the Methadone isn't one that would build up in Alysia's system and cause motility issues the longer she is on it. She said that Alysia would have had major issues more around 2/2011 not 4/2011. There are tests that can be done if GI feels this needs to be check further but Alysia would have to be admitted as it's not covered as outpatient. She really doesn't feel the Methadone is causing any issues for Alysia.

We continue to work on finding ways that Alysia can start feeling more independent again as that would help her self-esteem. We are trying to make sure she doesn't hide and that she is getting out a little. Unfortunately as noted by the docs this week she is wearing out REALLY fast (about 1/2 hr - 45min and she needs a nap). We all hope that this will get better as she gets more nutrition but I was reminded that it may be a very long road before we see improvement. We are trying to be very careful how we schedule things and that we are being realistic about what we are asking of her right now.

Hope you all have a wonderful and quiet weekend.

Janet

Alysia was released from the hospital today

2011-05-01T17:38:00.001-06:00

Alysia was released a bit after noon today. We are home, exhausted, and trying to fumble our way around to finding a new routine. We will start working on finding ways of making the new GJ-Tube and 24hr/day feedings workable, while trying to maintain self esteem and fashion.

By the time we made it home she was wiped out, shaky, and had nausea. Hopefully she will regain strength and stamina quickly as she is very frustrated right now.

That's all I have for now. Thanks again to all of you that gave us so much support and encouragement - we couldn't get through these crazy times without it.

Hugs
Janet

Happy to say it was a fairly uneventful day

2011-04-30T21:46:00.000-06:00

Well, the new medication seems to be helping a lot. She is now up to her goal pump feedings of 70cc/hr and they took her off of the TPN!!!!

The pic-line will stay in for now, greatly due to Alysia's request as she is scared something is going to go wrong again. We still have no answers as to why she is suddenly having issues with food that she has been eating and getting for years, but whatever the reason we have to deal with the issues. Alysia will continue to need to be on a low fat diet (she already had to due to her Pancreas), she has to be on a low fiber diet as well due to the poor motility. She also can't have any acidic foods now...

She will have to be on 24hr/day pump feedings until we can hopefully continue to increase the amount she is able to handle and give her some time off the pump during the day. This could be an issue since the GJ-tube isn't placed as far as it should be.

IF everything goes good tonight and tomorrow morning there is a CHANCE that she will be able to come home tomorrow. She texted her GI doc this afternoon advising that she is fine and doing great...he texted back that they needed to see how she does tomorrow as well... that's what he gets for giving her his cell phone # and encouraging her to text him... He will likely be in 2pm or after so we'll see if she gets the ok.

When she does come home it will take some time getting use to things. The GJ-tube is very different then the G-tube she has had her whole life. She will have to learn how to do many of the self care things she has been doing for years as it has to be done differently now. Not to mention the extreme mental stress she has been under and the anxiety about everything that has happened and the realization of just how sick she was and again with no answers why. She has taken short walks the past 2 days at the hospital and by the time we make it back to her bed she is shaky.

She is gaining weight - today she is up to 42 kilos!!!

Thank you to all of you that have been offering support and prayers. It means a lot to both of us.

Janet

Adding a new medication to help with motility

2011-04-29T22:28:00.001-06:00

So, Alysia woke feeling a bit better and definitely looking better.

They could get her pump feedings to 45cc/hr last night and we thought that the stomach issues at that point may have been from stress during the night (stupid things done that didn't need to be.) So, we attempted to increase her feedings to 50cc/hr but after about 2 hours we had to turn it back down due to nausea.

We did grow concerned when we realized Alysia hadn't used the restroom in about 14 hours and when she had tried she wasn't able to go. They did an ultrasound type deal and could see over 400cc of urine in her bladder. So, I told Alysia that her body seemed to be having trouble remembering it's awake and that we needed to move around some to wake up all her organs. Ok...so she knew that meant that if she wasn't able to get things moving at least some that they would be talking catheter...not going to happen! She did great and she was able to get things going. Whew!!!!!

The bigger problem was that the day nurse started talking that she was going to go home today (no clue where she got this info from) and when I questioned her on it she didn't catch on and just said that was the impression she got at rounds...really... I let her know that I was sure we weren't leaving today as the GI doc didn't give that impression and he let Alysia know that one of her favorite GI docs was coming on tonight... but all day Alysia had it in the back of her mind she may get to go home and the nurse never would back down on what she indicated to Alysia. Finally we ran into the floor doc (5:15ish) and Alysia was told that she MAY get to go home Monday...crushed heart!!!

The GI doc did come back in and check on us before he left for the weekend. They want Alysia up to at least 60cc/hr by pump feedings and then she would still have to come home on TPN as well. They are going to put her on Reglan to help with the motility of her intestines (we know motility has always been an issue but we have had 2 radiologists this week (one who knows her pretty well) advised that motility seems to be worse then normal. Reglan should also help some with the nausea.
We did get to eliminate the possibility that she had Eoslinophic Esophagitis as Alysia has been scoped many times and there is no sign of this.
GI said that Chronic Pseudo Obstructive Disorder is really hard to diagnose but they truly don't feel this is what is going on with Alysia.
Mitochondria Disease is always a possibility for Alysia, however they aren't looking in that direction at this time and it wouldn't be a good time to diagnose this. (I have to admit that I haven't read up on this one yet as I hear it's a bit scary and I'm just not up for it with Alysia in the hospital right now...but I will be checking into it more soon)

Tonight she is a bit of a mess. Stressful day with lots of disappointments. She had to deal with the realization that she was likely coming home on TPN and that really crushed her. She is scared of the new GJ-tube as she doesn't want it to come out. She is not seeing any end in sight and that is really scaring her. So, we are doing lots of talking these days and trying to answer questions, concerns, and remind her that she had taken care of herself better than most people do and that is nothing she could have done different - none of this is her fault....

That's all I have for now
Janet.

Alysia's new piece of equipment

2011-04-28T22:20:00.000-06:00

Tonight the computer is working so I can get info out in a more timely mannor (thanks for your help this morning Jen!)

So, Alysia doesn't have the SMA but she still can't tolerate much in her stomach and in reality she is still dealing with nausea with nothing much going in her stomach. The bottom line is that we have to figure out a way to get allow her to stay hydrated and get nutrition even if we don't find the answers to why right now.

So, today we opted to go ahead with putting in the GJ-tube.
This link will show you a diagram of how it's to be placed. Of Course with Alysia's unique anadamy it didn't go as smooth as it should have and they weren't able to get it in as far as they would typically want. She was told it would take about 1/2 hour as she already had to stoma for it; she was on the table 2 hours (by the end she was in pain from laying on her back that long; with all her back issues the hard steel table wasn't good.) They were able to get it to the duadnal but ideally it would have been placed down to the Jejunum. They are hoping that the placement will work for her, if not they will have to try again to get it down further.
http://www.google.com/imgres?imgurl=http://www.mountnittany.org/assets/images/krames/115616.jpg&imgrefurl=http://www.mountnittany.org/wellness-library/healthsheets/documents%3FID%3D2491&usg=__nNEykSBqt3IgcHMfCZXR9Kmr4kA=&h=224&w=338&sz=55&hl=en&start=1&sig2=5C8s4XFPiWqKutyfrkRRuQ&zoom=1&tbnid=lC1E4iyEfPOBuM:&tbnh=79&tbnw=119&ei=yDi6TcXqGOfW0QHNgsznAQ&prev=/search%3Fq%3Dgj-tube%26hl%3Den%26sa%3DX%26rls%3Dcom.microsoft:en-us:IE-SearchBox%26rlz%3D1I7ADFA_en%26biw%3D779%26bih%3D411%26tbm%3Disch%26prmd%3Divnsb&itbs=1

This is a picture of what the GJ-tube looks like on the outside of the stomach. We have been able to put as much of a good spin on it as possible so at least she is starting to find some positives for it.
http://www.google.com/imgres?imgurl=http://www.madelinelester.com/070806/070806-01.JPG&imgrefurl=http://www.madelinelester.com/070806/070806.htm&usg=__91tTIQ5h9NHjyMRt5sXGWugI79Q=&h=262&w=350&sz=35&hl=en&start=2&sig2=dEiirbTLIAqhLLljs5b9rA&zoom=1&tbnid=-5HcTrKBCWCdPM:&tbnh=90&tbnw=120&ei=yDi6TcXqGOfW0QHNgsznAQ&prev=/search%3Fq%3Dgj-tube%26hl%3Den%26sa%3DX%26rls%3Dcom.microsoft:en-us:IE-SearchBox%26rlz%3D1I7ADFA_en%26biw%3D779%26bih%3D411%26tbm%3Disch%26prmd%3Divnsb&itbs=1

Today she did gain some weight, she is up to 40 kilos...who knows how much of that is barium from yesterday and today.... Either way I am celebrating!

Tonight they will start to increase her tube feedings and see if they can start lowering the amount of TPN she is on. None of us know what her body is going to do or if this GJ-tube is going to work for her so please cross your fingers.

I have to tell you, these past 3 weeks have been VERY scary. I haven't seen Alysia looks this bad since the NICU or maybe 2003 when they did emergency reconstructive surgery on her. I have had some very frustrating conversations with people that don't understand Alysia's history, where we have been, and how far we came before this major and sudden set back happened. I have also had some wonderful support and encouragement and I can't thank you enough for that as we couldn't make it without it.

Please keep all the prayers, positive thoughts, and words of encouragement coming. They are passed along to Alysia so that she too knows how many people are fighting for her.

Not sure what tomorrow will bring, but I will fill you in when I can.

Hugs
Janet

Wednesday 4/27/2011 with Alysia

2011-04-28T21:53:00.001-06:00

Wednesday was a rough day. Lots of worry, lots of weighting, and no answers.

They did get the pic-line in so they have been able to use that for blood work and she is getting TPN nutrition through it now (she have been on IV nutrition since 2006).

They did do the upper GI. The findings weren't really new info
1) Upper Esophegus is mildly dilated above the TEF repair site. Maximum narrowing has not significantly changed measuring a maximum of 6mm.

2) Distal Esophagus idps normal but there was a defect of the fundoplication seen in the stomach.

3) Stomach was otherwise unremarkable. There is a blind-ending loop of jejunum off of the anterior side of the stomach.

4) A loop of bowel is seen extending towards the biliary tree which is mildly dilated and instantly opacifies all the biliary system (consistant with prior surgeries).

5) Entire small bowel is on the right side of the abdomen, therefore, no possibility of SMA Syndrome.

6) Colon is on the left

7) Multiple bony abnormalities are again noted.

The stool sample came back negitive for C-Diff.

The urine cultures haven't grown anything.

The biopsy results found no infections and the only thing notable was inflamation in the duodenal. They going to check her again for Celiac.

So far today (Thursday 10:30am) we haven't gotten to see any of the docs and we have no clue what the next steps are.

I will try to update more when we know something.

Janet

Alysia was admitted to the hospital today

2011-04-26T22:56:00.000-06:00

So, they decided to admit Alysia today. We were sent to the ER around 2:30 so that things could get done at a faster pace like lab work, urine, and x-ray... they attempted IVs 1 blew right away, 1 the vein rolled or something, and the 3rd infiltrated. They have all suggested that if she is going to need an IV or continued lab work that a pic-line be put in (we will talk with GI about this as Alysia is already asking for a Medport or Broviac).

We finally got the the floor room about 6pm. They are waiting to see if the urine grows anything, they are going to do a stool sample, the biopsy results aren't back yet. They will put her on pump feedings over night and agreed to no blood work in the morning until we can talk with GI. The floor doc is wanting to talk with GI about the possibility of something as the sudden weight loss (when she was there in 12/2010 she weighed about 50 kilos, she now weighs around 38 kilos) and severe nausea fit it to a T. I thought she said it was a syndrome called SMS, but since that is something to do with texting I think I must have heard it wrong....

Tonight they hope to keep it pretty quiet. Tomorrow we will see what the GI doc says and if any of the tests are back yet.

Thanks for all the support
Janet

Alysia is down to 89.4 lbs

2011-04-25T18:12:00.001-06:00

Things continue to be rough. This weekend the nausea continues and if she tries to eat it just intensifies along with some stomach pain. Removing the stint did get rid of the side pain so that's good and that means it was the right time to take it out. However, we still don't know the cause of the extreme nausea.

Last night we ended up putting her on her feeding pump with some Pedialyte as she just wasn't looking good at all. Today her GI doc saw her and you could tell he was concerned (rightfully so). Since 2/28/2011 Alysia has lost 13.4 pounds. She has had trouble with formula and food since 1/2011 and not been able to eat much of anything the past 3 weeks. Alysia was in tears in his office begging to be in the hospital until they figure out what is wrong and fix it. He still doesn't have the biopsy results back so he really has no direction to go right now. He does recognize that there is something wrong and he expresses his concern about how she is doing.
For now he is going to increase the Kytril (heavy duty anti-nausea med) to twice a day. He is going to put her on her feeding put with 1/2 strength Peptamen Junior at 40cc/hour (remember 30cc is an ounce) for 10 hours/night. I am to touch base tomorrow afternoon and let him know how she is doing. If she can't tolerate this then she will have to be admitted to the hospital.

Thanks for the continued support we have gotten
Janet

Stint was removed 4/21/2011

2011-04-22T20:13:00.000-06:00

Sorry I didn't get this out yesterday. Yesterday went well. The doc (who we didn't know) was good and was able to remove the stint and do 3 biopsies (bowel, stomach, and esophagus). He said that there were no obvious signs of infection.

Yesterday they had a cancellation so they hurried through things with us to get her in early - this is good except I saw a huge difference in information gathering and care. I find myself caught in this new stage where I am having to find new ways to dealing with doctors and staff as I'm having trouble getting them to understand that yes she has an adult body (they have different guidelines they must now use), she is 15yrs old, but she is developmentally 10yrs old, educationally 4th grade, and IQ of 53, plus all the medical issues that she has/has had. They can't treat her as a typical 1 time through kiddo and they need to not talk to me like a 1 time through parent.

I was able to keep Alysia from seeing what was actually going on but it was a rough time. Having to shove information in front of the anesthesiologist as she wasn't even asking what meds she had had. Advising the nurse that she had had many procedures and YES at this hospital. Advising a nurse that she will not tell me not to lay my hand on my daughters head when they just brought me back to see her (oh ya, don't tell Momma "don't touch her". She hadn't just had major surgery, she wasn't at risk, she was sleeping off and on, and I know what calms Alysia and what Alysia needs and expects.)

When the doc came out to talk with me and let me know things went great he mentioned that the only information he was given was that she had a stricture in her esophagus and of course the common bile duct - he was not told anything about her unique anatomy!!!!! WTH!!

Needless to say, I had a migraine by the time they took her back and the Excedrin Migraine didn't touch it. I had a total full blown migraine by the time we got home. After a few hours of getting her settled and in shape my Momma was able to take over so I could take more meds and go lay down. THANKS MOMMA!!!

I will be developing a new way to deal with docs and staff now. I have to figure out a way to forcefully advise of must know information but in a way that won't reduce Alysia's comfort level in ability of care or reduce self esteem.

Thanks for all the support we got
Janet

The Good, The Bad, and Our Alysia

2011-04-19T20:48:00.001-06:00

Hello all

So, here is where things stand
1) Alysia is still having extreme pain in her stomach and right side (even on Methadone, Muscle relaxant, Advil, and Tylenol)
2) Alysia is still extremely nauseous (even on Kytril, Benedryl, and other anti-nausea meds)
3) Alysia will get her last dose of antibiotic tomorrow morning
4) Alysia has lost 12 lbs in the past 3 months

So, Alysia is now scheduled to have the stint in her Common Bile duct removed Thursday. We check in at 10:30 and she is scheduled for noon.

She was seen by her Endocrinologist today and it was agreed to take her off the growth hormone shots as she has too much going on and if we push things she MAY be able to get another inch out of the shots - not worth it. She will have to go in 7/6/2011 for a 4 hour testing to check her hormone levels at an adult level. She will go in 2 weeks later and get the results, if all are good (and the doc is hopeful) they she will be completely done with her treatments.

We are hoping that after Thursday she will be able to eat again. She has to see the nutritionist the end of this month to check her diet and see if there is anything that needs adjusted. She has to see her GI doc mid-May and we are crossing our fingers to show a large weight gain between the 2 appointments. She REALLY doesn't want to go back on the feeding pump.

Needless to say she is stressed and frustrated.

That's all the info I have.

Janet

Alysia has Pseudomonas

2011-04-13T16:28:00.001-06:00

Hello all

Yep, that darn icky Pseudomonas is back in Alysia's life. You know it's suspected (for a long time now) that she actually has Pseudomonas laying dormant in her body and when things are just off track enough it makes it's self known. It explains why she is feeling as bad as she is. They are going to have to change her antibiotic to Ciprofloxacin and she will be on that for 7 days to make sure it clears from the bladder. She will need to be re-checked a week after the antibiotics are gone but can do that through her primary care doc.

The Urologist doesn't want to see her or do anything else at this point. I had already advised that I feel the reason she got this one is that we are trying to find the right balance of water and calories when taking Alysia off her feeding pump. They agreed that this could have easily been the reason and we will call it a fluke.

So...time to celebrate but of course Alysia isn't seeing it that way. She still feels really crummy, nausea, and exhausted. Hopefully the new med with get her to feeling better fast.

Janet

It's official....she has a UTI

2011-04-12T17:35:00.000-06:00

Hi all

Alysia was seen this morning by her primary care doc just for an ER follow-up. He couldn't tell us anything really as nobody had even called to let him know she was in the ER or faxed any lab results.... He did call this afternoon and said that her urine culture is growing a couple kinds of bacteria. They don't know what it actually is yet or sensitivities but it is likely she is on the right antibiotics, if she isn't they will call us tomorrow and change it. He wants to see her back after the antibiotics to make sure all is cleared up.

Now I will have to call the urologist and let them know. They did the DeFlux surgeries so hopefully this is a fluke and we will just watch to make sure it doesn't happen again. I will put a call in tomorrow morning - please cross your fingers they won't want to do anything at this time.

Thanks for everything
Janet

Time to catch up

2011-04-12T06:47:00.001-06:00

Hello

Last Tuesday 4/5/2011 I talked with Alysia's Psych doc as she wasn't doing any better. The increase in Abilify didn't really do anything so we put her back down to 5mg where she was before. I did talk to the doc about increasing the Klonipin as that seems to help her and I think that would make a difference. So, we are slowly increasing the Klonipin by 0.25mg every 3 days but not going any higher than 2mg in the morning and 1mg at night.

Last Thursday Alysia was seen in the pain clinic. They are happy with the results of the 2nd nerve block but are concerned about her left Sacroiliac Joint. http://en.wikipedia.org/wiki/Sacroiliac_joint
I will contact her physical therapist to see if she will send us some specific stretches for it. There is another kind of injection we can do if the stretches don't help enough. She will stay on her current pain management meds and in talking with them it sounds very unlikely that she will come off of any of them due to her condition and it's a quality of life issue at this point.

Yesterday 4/11/2010 Alysia ended up going to the ER. Her side and stomach pain increased to a new high Sunday along with the nausea. She had stopped eating and would sip some water but that's it. She has been running 99s since last Thursday but with Alysia that could mean the room is too hot or she has a blood infection...never know. The stomach pain, side pain, and nausea are symptoms of almost everything with Alysia so you can't tell too much from that. Alysia felt that it was her stint and she wanted to go to the ER to see if it needed to come out. DONE! It went ok. They rant urine test, blood work, abdominal and pelvic ultrasounds (could find the left ovary), and an x-ray of the common bile duct. They say there are "indications" that it's a bladder infections but will culture it to make sure and see what grows. They gave her a shot of Rocephin before we left. They put her on Cephalexin 500mg 3x a day for 10 days. She has to be seen 4/12/2011 and if her primary care doc can't get her in then I have to take her to the ER this morning to have her seen.
It was a bit rough on Alysia and we were there 5 hours dealing with the unknown and tons of people trying to start IVs and look at her and run tests and it got loud and crazy for the last part of the stay...too much all at once for her to handle really. Hopefully the meds will have her feeling better soon. We will have to see what happens today and what everyone says.

I will try to stay in touch
Janet

Alysia had her 2nd Nerve Block 3/22/2011

2011-03-23T14:34:00.002-06:00

Hi all

Sorry I didn't get this out yesterday but Alysia was a bit of a mess after the procedure.

Everything went really well and she had the Medial Branch Nerve Block on her lower back around the facet joints for T12 - L3. They did more then they planned on because the area of severe pain was so large. She had a total of 8 injections this time and they injected a local anastasia as well as steroids. The local has more of an immediate response and she did have more flexibility with less pain. The steroids will take 3 - 7 days to start working. This procedure can help anywhere from 1 week to 1 year.

There is a chance she will require this done on the upper back as well but that would have to be done a bit differently (I didn't get info on what that would actually be as I had enough going on) but we will wait to see how she reacts to this one.

For now she has muscle spasms going on and the general ick feeling. For now she has to stay on the Methadone and Flexeril. She will continue to use the TENs Unit, she has a physical therapy evaluation this Friday (she is totally worried about this) and we will see the pain clinic 4/10/2011 and see how she's doing then.

(http://www.dhmc.org/webpage.cfm?site_id=2&org_id=105&morg_id=0&sec_id=0&gsec_id=2404&item_id=23754).

Thanks for the support we have gotten, it means more than you all know.
Janet

Nerve Block is scheduled!

2011-03-15T16:33:00.001-06:00

Hello all

Last Friday I ended up calling the Pain Clinic as Alysia's pain was out of control. They added a muscle relaxant called Flexeril (cycolobenzaprine) 10mg once a day to her daily medications. It has helped in terms of movement but the pain is still a HUGE issue. The good news is that they were able to move up her next Nerve Block from 4/19/2011 to next Tuesday 3/22/2011. Of course we don't know what time yet, they are thinking early afternoon and will call us Monday to let us know exactly when. It has been sad to watch everything she was able to regain being taken from her as her pain level increased again. It took a large toll on her mental health as she began having to cancel things. She is hopeful that she will be back to dance and participating in Co-ops again 3/28/2011.

Today Alysia saw her Psych doc. As you can imagine it wasn't the smoothest appointment since she feels crummy and has no patience as it is. She was good when we got there but after sitting in the lobby and it being a bit loud and crowded off and on she was already stressed when it was our turn. I told the doc that if we had this appt 3 weeks ago the report we would be giving would be totally different but as it stands now Alysia is really struggling. It was obvious to the doc what I was talking about and she agreed Alysia needed a little more help right now so she is increasing the Abilify from 5mg to 7.5mg once a day.
Since around Kindergarten I have talked to people off and on about Alysia possibly having Aspergers Syndrome. She exhibits many of the signs. I again brought it up today as I feel it would be helpful to us and others to know and that it would give us something we could seek out more information on. The doc said it doesn't matter if she has it as nothing will change as she is already getting services. What was interesting is that she didn't say "no, she doesn't have Aspergers". I will continue to read and see what's out there but I don't think I will get any doctor to say she has one thing or another since she has so many issues going on. Yes, I know it makes no difference but when you have lived for over 15 years with no information on what to expect, you want every bit of information you can have and ever bit of information you and try to find.

http://www.aspergersyndrome.org/Articles/What-is-Asperger-Syndrome-.aspx

Anyway, cross your fingers for Tuesday!

Janet

Pain Increasing Again

2011-03-10T16:07:00.001-07:00

Hello

I will start with the good news. Last Monday Alysia saw her GI doc and he allowed her to come off of all night pump fluids. He really didn't think she could do it and stay hydrated so he had her tested Friday. Tuesday we found out that her levels were fine. He is also worried that she isn't getting enough protein in her diet (come on....I know how to watch fat and protein in her diet. It's my diet I have trouble watching). Alysia has to see the nutritionist the end of this month but I added up the protein in her diet and she gets 92-94 grams a day. From what I can find they want it between 50 - 125 grams in a diet of 2000 calories (Alysia gets about 1860 - 1930 calories a day). In the past month Alysia has lost about 5 lbs but this was with taking her off of the night formula feedings and substituting Pedialyte. So, she will regain so of that as her body adjust. We see him again in about 5 weeks to check her weight.

The past couple of weeks we have been seeing Alysia's pain increasing again. It is again interfering with her ability to live the life she wants. Today she was seen in the pain clinic and they agreed with her request for another nerve block. This one would be a bit higher then the last as the location that last one was done is still working. The area above is was one of the areas they had great concern with since the 1st appt. It is very tight and it's where some of the disc issues are located. Right now they are scheduling for 4/2011 but I don't have an exact date yet and they will put her on the waiting list to try and get her in sooner. They are also a bit concerned about some of the tender points she has around her forehead and temples as this can be a sign that her back problems are starting to cause more headache issues and that we will have to watch her for increased migraines. We will continue the Methadone, Advil, and Tylenol as well as the Lidocaine patches. She continues to reduce her activities as her pain increases. Today the exam was extremely painful and cause severe muscle spasms. I tried all the normal meds she has been using and finally had to give her a Diazepam. Luckily the combination of all helped bring the pain back down to at least tolerable.

We appreciate everyone having patience and understanding while we once again have to juggle life.

Janet

Alysia's Jouney

2011-02-15T16:13:00.000-07:00

hello

I just can't seem to find time to get these emails out timely...UGH!

Anyway, last week Alysia did see her doctors at the pain clinic. Dr. Slover (the pain specialist) is very happy with how Alysia is doing and you can actually see a difference in how she walks, stands, etc. We spent about 45min talking with Dr. Kent (who is the pain Psych doc) and she was very happy that Alysia is now able to start working on her anxiety issues and showing so much interest in doing things again.
The specific area that the nerve block was done is MUCH better, however she continue to have pain above that area as well as her side and stomach. Alysia is not ready to have another block done - it really was hard on her and the back spasms after were pretty bad. When Alysia is ready (or the pain gets bad enough) we will look at doing another one in her mid-back area. For now we are going to leave her alone - staying on her Methadone 3x/day and using Advil and Tylenol for break through pain. With these and the nerve block she is now able to keep her pain around a level 4 which is MUCH better than before the block.
We will continue to see both doctors monthly so that we can make sure we stay on top of pain control.

Last week was a high stress week just because she is wanting to do many things but still working on the anxiety of actually doing them as well has re-integrating back into classes and friendships. She is also having to find a happy medium of participation and pain control especially while her muscles all get use to being used and stretched again. She did attend 2 Co-ops with the home school group, so she has attended 3 so far as she attended one the week before, and each time she does better. Talking and interacting more, not as drained after it's done, things like that. She also was able to participate in one of her dance classes and came out feeling pretty good - sore but better than she has in years after a practice. Alysia also asked to go see a movie with a friend (thanks Amy! sorry the movie sucked) which she hasn't done is a very long time - it was really hard on her but she did it, and she wasn't in too much pain after (for the past couple years sitting through a movie has been very painful). Not to mention she even ran some errands with us last week.

Crossing our fingers that she continues with her hard work and sees the huge payoffs.

Thanks for all the continued support
Janet

We're home

2011-02-04T13:19:00.000-07:00

Hello

We actually made it home about 10:30 so that was nice....

When we got to the hospital she was running about 99.9 fever but they decided to let her go ahead and have the procedure anyway as there was nothing else going on. This morning she had the Medial Branch Nerve Block on her lower back around the facet joints. She had a total of 6 injections and they injected a local anastasia as well as steroids. The local has more of an immediate response and she did have more flexibility with less pain. The steroids will take 3 - 7 days to start working. This procedure can help anywhere from 1 week to 1 year. If Alysia gets relief but it's just a short time they will do a similar procedure that's a bit stronger and would last even longer.

There is a large chance she will require this done on the upper and mid back as well but we will wait to see how she reacts to this one.

For now she has muscle spasms going on and the general ick feeling. The doctor was very hopeful that this is what she needed due to the response immediately following the procedure. For now she has to stay on the Methadone and we will see the pain clinic next Thursday and see how she's doing then.

(http://www.dhmc.org/webpage.cfm?site_id=2&org_id=105&morg_id=0&sec_id=0&gsec_id=2404&item_id=23754).

Thanks and have a great weekend
Janet

positive energy, prayers, and anything else you can think of

2011-01-29T14:14:00.001-07:00

Hi all

Here is a quick update on what's been going on. Alysia has her 1st Medial Branch Block this coming Friday 2/4/2011 and we are asking for all the positive energy, prayers, and anything else you can think of that it does the trick to help with the severe back pain so that she can get off some of the pain meds.

1/24/2011 – Endocronologist had an x-ray done to check where Alysia is regarding growing. Alysia’s bone age is 13 years 6 months and that she is 97.7% done growing. Her potential height is 4’11”. We will continue with the Nutropin at 2.8mg 6 days/week.
1/25/2011 - Psych doc was impressed Alysia was maintaining as well as she is with all that is going on. She wants to leave all meds as they are including the Klonopin at 1mg 2x/day which has helped Alysia a ton. She wants to see her again after her 2nd Medial Branch Block and see how things are going once the pain gets under better conrtol.

1/26/2011 – Dr. Barrios isn’t able to determine why Alysia is suddenly having trouble with night feedings, but even with all that has gone on she did still gain about a pound in the past month. He is going to see how she does without the night time formula but wants her on Pedialyte 5 nights a week for now. We are to continue to use Lactaid with any meals that she is having dairy. He agrees that she will not be able to eat a lot at one time and will likely need at least 6 small meals a day.

1/29/2011 – Changed her birth control pills to Ovral-28 due to breakthrough bleeding for past 14 days (as of today)

Thanks
Janet

UGH!!! Can't Win!!!

2011-01-14T14:45:00.000-07:00

Hello all

Please allow me to vent for a minute...

So, we are finally getting Alysia's pain under control, YES!!!!! Unfortunately it appears that the new medication level isn't working for her stomach. We have spent the past 3 - 4 days trying to figure out how to control the nausea. What combination of meds could give us the magic potion to help get this last piece under control???

She is on everything possible to help protect her stomach from the harsh side-effects that the pain meds can cause - Zofran every 6 hours, Carafate 3 times a day, Aciphex daily...she is using the fan to blow directly on her, she is getting tea through her G-Tube to try and help calm things... Today they pulled the plug and said that we are going to have to reduce the Methadone to twice a day to see if we can get the nausea back under control. They said that she is likely going to have to chose each day if she wants to deal with pain or nausea until she can get in for the procedure 2/4/2011.

We will keep working on finding magic combinations to try and balance the two but it's becoming more and more frustrating and it's SO hard to watch her have to go through all this and have VERY little that I can do for her.

Thanks for listening
Janet

Carbon Monoxide Found....UGH!

2011-01-11T14:39:00.000-07:00

Hello again

You know, I just think this is getting a bit ridiculous... late this morning we found out that the furnace under the house is cracked so there was low levels of carbon monoxide. They don't feel that the levels are a big worry but given Alysia's medical history and her current symptoms, that we haven't been able to get under control, it could be contributing to the nausea and headaches.

For today we are moving her out of that side of the house and over to Momma's. They will be back tomorrow to fix the furnace which will likely take all day. Then we will want to completely air out the house so I told her to plan on staying at Momma's until Thursday afternoon.

http://www.epa.gov/iaq/co.html
Carbon monoxide is an odorless, colorless and toxic gas. Because it is impossible to see, taste or smell the toxic fumes, CO can kill you before you are aware it is in your home. At lower levels of exposure, CO causes mild effects that are often mistaken for the flu. These symptoms include headaches, dizziness, disorientation, nausea and fatigue. The effects of CO exposure can vary greatly from person to person depending on age, overall health and the concentration and length of exposure.

UGH!!!
Janet

Course of Prednisone

2011-01-11T14:26:00.000-07:00

Hello

Well, Alysia still has a deep, dry, painful cough and still getting chest pain (but she is down to having chest pain only when coughs). Primary care didn't make us go in to be seen yesterday which I was VERY thankful for but he is putting her on a 3 day course of Prednisone.

Yesterday I got a call from the pain clinic advising they had to see us since they had increased her Methadone 12/30/2010. Now, understand I have talked with them weekly (if not more) and they never asked me to move up our appointment (set for 1/20/2011). So when they asked if I could be there in 1 1/2 hours I was pretty frustrated. I did explain that our lives are THAT flexible and no...I couldn't be here at 11:15. The the nurse gets on the phone explaining to me how Alysia would need to be seen each month - I again reminded her that I am fine with that and already has an appointment scheduled within a month from out last appointment. I have no problem changing my appointment but I have a problem with them calling for me to be there with no notice. So, they "fit her in" at 1:45 yesterday and luckily I have wonderful people I work with who had already arranged to leave a bit early from work due to Alysia not doing well. UGH!!

ok...so the appointment went very well. She saw the Psych doc 1st and she helped Alysia understand a bit more about the biofeedback and helped Alysia address some of her concerns and explained that it was to help boost the medication so that it can help her make it until she can get to the next dose. Alysia was still very concerned so they talked about the doc putting together a CD for Alysia that tells her stories that can also teach her body to work to make the medicine work better and a few stories that I can read with Alysia as well. She helped Alysia talk about her questions and concerns about the procedure 2/4/2011 and Alysia seemed much better after talking with her.

The pain doc came in shortly after and she is pretty much down to business which takes Alysia by surprise...anyway, She was glad Alysia is getting some relief but feels it would be beneficial to increase the Methadone to 5mg 3x/day (instead of the 2x/day) since she does have such rough afternoons and evenings. She told Alysia she needed her to go do a urine sample which of course flipped Alysia out (she always is afraid they will make her do a catheter...). The doc looked at me and said it's to make sure she is taking her medicine correctly. I looked at Alysia and said - "Alysia, it's just to check your med levels", Alysia immediately relaxed and said "oh, ok". If only the docs would learn to communicate with her....

So, cross your fingers all this helps her start feeling better. We have to have her healthy for 2/4/2011 or they won't be able to do the procedure to help with the pain at the source.

Thanks
Janet

Sinus Infection

2011-01-04T18:16:00.000-07:00

Hi all

So, I think we have a bit better control of the back pain. We found a combination of Methadone (5mg 2x/day), Tylenol, and Advil can hold things fairly well (at least closer to the livable pain) without knocking her out.

Today I took her back to see her primary care doc as the cough and chest pain she has had since before Christmas is getting worse again. Her lungs still sound clear so the pnemonia is not back but he things that she likely has a sinus infection and that is why she can't get rid of the congestion and inflammation in her ribs. He is going to have her do 10 days of Naproxen and 10 days of Amoxycillin.

Cross your fingers! We need her healthy so she can have her procedure to stop the back pain.

Janet

Pneumonia is gone but we have swelling

2010-12-29T16:36:00.001-07:00

Hello again

Alysia saw her primary care doc today and her lungs sound much better so the antibiotic seems to have worked on the pneumonia. She did have a chest x-ray done yesterday as she continues to have chest pain. Her lungs are clear but it does show that she has a lot of swelling around her ribs. It's likely due to the coughing she had been doing and unfortunately there isn't a lot that can be done for it other than lots of resting. She also has swelling in her sinuses that is making her feel worse in general.

The itching due to the reaction to the Fentynal is a bit better but she is still itchy and having to take Benedryl every 4 hours.

Hopefully things will slow down a bit
Janet

Alysia had an allergic reaction to the Fentanyl

2010-12-28T18:18:00.002-07:00

Hi all

So Alysia has had minor itching since about Sunday but last night (a few hours after we put on a new patch) it became severe and unbearable. She was up off and on all night until she gave up about 5:30 this morning. She was getting Benedryl last night and continues to get it today.

We have talked with her Primary care doc (seeing them tomorrow anyway) and with the Pain clinic; we all believe she is having an allergic reaction to the Fentanyl.....she gets this way with Morphine as well. So, they took her off the Fentanyl and they are going to put her on Methadone; small amount to start and we will touch base on Friday to see how she is doing and if they will need to adjust the dose for better pain management.

http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682134.html

Hopefully things will go smoothly with this new med.

Janet

Alysia just reached her 54th appointment (in the past 6th months) today!

2010-12-23T17:25:00.000-07:00

Hi all

Crazy isn't it?!?! Yep, we always joke that we live at the doctors but I'm starting to think we were actually right... One of the questions we had to answer for the pain clinic appointment was how many appointments she has had in the past 6th months,,,54!!! UGH!! No wonder we are tired!!

So, yesterday morning 12/22/2010 Alysia was seen by the Pain Clinic. Amazing people there and they understood Alysia's disbelief (and my apprehension) that they were going to tell us anything promising. For once it was VERY nice to be surprised. When the doctor said "we can help her allot" I was in tears. So, they are actually going to be doing several things:
1) putting her on a Fentanyl Patch - to help control her pain and increase her activity level. She will apply a new patch every 72 hours.
2) giving her Lidoderm Patches - can apply them to the painful area for 12 hours and then remove for 12 hours.
3) physical therapy evaluation. They have some hand-picked physical therapists that are specialized in working with kids like Alysia. They are members of the Multidisciplinary Pain Clinic. This is a pain consultation to see if there is any manual therapy to help with the back pain including core strengthening and slow stretching. (having to wait for insurance to approve - have a tentative appointment 2/7/2011)
4) the use of a TENS unit (Transcutaneous Electrical Nerve Stimulation) - applies electronically currents to prevent the transmission of painful stimuli and induce pain relief. (having to wait for insurance to approve - have a tentative appointment 2/7/2011)
5) Dr. Slover will perform a Medial Branch Block (currently scheduled for 2/4/2011 at 7:30am but we are on a waiting list to get in earlier). This is done while Alysia is under Anesthesia. They apply numbing medication and steroids around the nerves in her lower back.
6) she will be seen at least monthly for now by the Pain Clinic.
***Dr. Slover is the MD that will see her regularly to make sure the pain management is working and tweaking anything that needs to be.
***Dr. Kent is the clinical psychologist who will see Alysia to work on a variety of techniqes such as relaxation training and cognitive pain control to help Alysia control her pain and reduce stress caused by pain.

Yesterday afternoon 12/22/2010 Alysia saw her GI doc.
1) Due to her requiring another ERCP and stint placement they are putting her back on Actigal.
2) He is having Alysia maintain her current feeding pump schedule for another 2 weeks and then on 1/5/2011 she will be allowed to drop her pump feedings to only 5 nights a week!!!!
3) He said that she was sounding very congested in her chest and that I should watch her very closely.

So, today 12/23/2010 I have her see her primary care (like I'm going to just sit and watch her when she isn't sounding good and has been complaining of pain when breathing and coughing since Sunday...NO).
1) They thinks she likely has a bit of Pneumonia likely due to aspirating during the ERCP and stint placement last Friday. This is due to the exact places Alysia is feeling pain and the exact places they are hearing the concerns. There is a chance it could just be Adalecticise (air sacks are sticking together rather than filling with fluid) but they feel it is most likely the Pneumonia.
2) increasing her Flovent Inhaler to 3 puffs 2x/day until the cough is completely gone
3) putting her on Zithromaz
4) breathing as much moist, warm steam as possible
5) doing chest PT
6) back next Wednesday to make sure she is getting better

Thank goodness this should be the last of our appointments for this week and right now we only have 2 appointments next week!!!

Hope you all have a Wonderful Holiday.

Love you all
Janet

12/20/2010 Counseling appointment & Orthopedic appointment

2010-12-20T17:57:00.001-07:00

Hi all

Alysia had her first 1 on 1 appointment with her counselor today. She like Mariah but struggled today with the visit. Unfortunately this has a lot to do with her current pain level (stomach and side pain is gone but the back pain is still out of control) as well as her having to go back to the hospital today for x-rays (due to the Scoliosis) and seeing her Orthopedic specialist. She was very worried about not knowing which x-rays they were going to have her due and if it was going to make her back hurt more. She was also afraid they were going to tell her she had to go to formal physical therapy because of the back pain. Mariah did great and seemed very understanding and agreed it would be a process to work up to a more "normal" session.

Alysia was seen by PA-C Shasta Beal. Shasta is great with her and it helped that Shasta had a heads up that Alysia was just released from the hospital. Alysia’s Scoliosis isn’t worse. Her spine is adjusting itself to help with the Scoliosis so now instead of 2 curves she now has 3. The top curve is 9.8 degrees (closest to her head), the middle curve is 6.1 degrees, and the bottom curve is 7.7 degrees (closest to her pelvic bone). It is believed that the majority of the back pain is due to the current stricture she had in her common bile duct. Alysia is to continue with her activities including dance, etc. Next appointment with x-rays in 8/2011.

Nice to have some good news!!!

Janet

Alysia was release from the hospital 12/18/2010

2010-12-19T10:18:00.001-07:00

Hi all

Sorry I didn't get this out last night. Alysia finally got to come home yesterday afternoon.

The stint placement in her common bile duct is already helping and her stomach and side pain are gone. She is still having a lot of back pain and that will take a longer time to start to improve as it's a weak area in her body anyway.

We have a busy week coming up as she has 4 appointments. Counseling, Orthopedic, pain clinic, and GI.

Right now we are working on resting and getting over all that has been going on the past 2 months plus being in the hospital twice in less than a month.

Thank you for all the support that we got.

Love you
Janet

Alysia has been right for the past 2 months!!

2010-12-17T23:04:00.001-07:00

Hi all

Today Alysia had the ERCP - Endoscopic retrograde cholangiopancreatography (en-doh-SKAH-pik REH-troh-grayd koh-LAN-jee-oh-PANG-kree-uh-TAH-gruh-fee) and they found that she once again had a very tight stricture. They were able to re-open it and then place a stint in the common bile duct.

http://www.gihealth.com/html/education/photo/ercpStent.html

http://www.mayoclinic.com/health/medical/IM02271

Tonight she is doing well but having a lot of nausea. They seem to be getting that under control so now we just wait and watch to see if the pain starts to go away.

Thank you for all of the support, prayers, thoughts, and positive energy that has been sent our way. It has worked wonders and it really does help us to know we have so many people that care about us.

Love you all
Janet

Alysia was admitted to the hospital today

2010-12-15T22:19:00.000-07:00

Hi all

Here is a very quick update. Today Alysia's pain actually woke her up, this is new as she's been able to sleep with all that's been going on. We weren't able to get the pain under control even with the Advil every 8 hours and the Ultram every 4 hours.

Her nausea was really bad and as you know she can't throw up so she kept retching and we couldn't get that under control.

We ended up going to the ER and they are running blood work, urine sample, and strep culture. They are checking to make sure it's not her appendix.

Unless something comes back indicating another issue (besides what's already been going on), Alysia will have an ERCP (Endoscopic Retrograde Cholangiopancreatography) done and possibly put in another stint in her bile duct on Friday (around 2ish).
You can read more about the ERCP here http://digestive.niddk.nih.gov/ddiseases/pubs/ercp/

They have added Morphine to her pain meds (Advil and Ultram) and that has helped a lot and they are giving her Zofran through the IV and actually are able to give her more than we could at home.

It's much easier to answer texts and emails than it is to answer phone calls. I will try and touch base again tomorrow night. We expect to be in the hospital until at least Saturday or Sunday.

Thanks for all the support
Janet

Home with some answers

2010-12-04T11:09:00.000-07:00

Hi all

Sorry I didn't get this out last night but we got home just before 6pm, had to get meds from the pharmacy, and we were both pretty stressed and exhausted.

It was a toss up is they were going to release her but as Alysia said "if they aren't going to do anything to fix it then I want to go home". There wasn't anything they could do for her all they were going to do was try a different pain management and we can do that at home.

So, here is the scoop....she had the CT scan yesterday morning and it shows:
1) a LARGE ovarian cyst on you right ovary (4cm = 1.6inches)
http://www.mayoclinic.com/health/ovarian-cysts/DS00129

2) Mesenteric lymphadenitis - Swollen Lymph Nodes in her GI Tract
http://www.mayoclinic.com/health/mesenteric-lymphadenitis/DS00881

Both of these findings are VERY painful and helps explain the sudden more severe pain she developed this week. Neither of these were found in previous x-rays, ultrasounds, labs, or anything which means in the past 3 or so weeks they developed so we know it's not the cause of the new and increased pain she has been dealing with the past 6 weeks or so.

Here is basically what she's dealing with, think in terms of a triangle of pain: (of course I can't get gmail to allow me to insert a darn triangle to really help picture this)
acute pain: ovarian cyst & inflamed lymph nodes
increases pain: 6 weeks unknown - possibly GI or GYN, nobody can figure out
chronic pain: due to her internal construction - life long, daily

The acute pain: pain management, hopefully go away in 4 - 6 weeks, will likely see GYN for ongoing care
The increased pain: pain management, hope someone can figure out the cause of the new mystery pain
The chronic pain: hopefully the Children's Hospital Pain Clinic will be able to help manage this better.

Alysia is a mess right now. She hurts, she frustrated, and she is upset as once again there are no real answers for her.

Thanks for all the support it really means a lot to both of us
Janet

Quick Update - admitted to hospital

2010-12-02T22:36:00.001-07:00

Hi all

I just got home so this is going to be a VERY quick email so I can get something and get to bed.

This afternoon they admitted Alysia for the abdominal pain that she has been having. Yes, it's ongoing but this is a more severe pain for the past 6 weeks or so. Did this to get some tests in quicker and to try and find a way to manage the pain until we can get answers and get into the pain clinic at Children's. She will have a CT scan in the morning and then we will go from there. There is talk about another ERCP and possible stint just to see if it would relieve the pain as it has done so in the past but that would have to wait for Dr. Stathos and he will be back next week. We won't solve anything this visit but hope to find a livable comfort level until we can get more help.

I'll hopefully know more tomorrow.

Janet

11/29/2010 & 11/30/2010

2010-11-30T20:54:00.000-07:00

11/29/2010 Stools still hard, pain increasing. Abdominal/Bowel x-ray done.

11/30/2010 X-ray came back fine showing no obstruction and no backup of stool. Dr. Barrios is ordering a CT Scan at PSL and sending referral information to the Children’s Hospital Pain Clinic.

11/30/2010 Met with Dr. Moore and Amanda West. The Klonopin is helping even though Alysia continues to struggle with anxiety. Alysia is expanding herself more again but the anxiety before is still fairly high and she typically feels like she must push herself to stay and/or participate. Dr. Moore increased the Klonopin to 1mg 2x/day but if that begins to be too much we can cut it back on the night time dose. Talked with Amanda West as it’s becoming apparent Alysia isn’t bonding with her and not feeling the same connections she did with Teresa. The concern being that Alysia won’t be comfortable with anyone trying to help her with the anxiety, but Amanda agreed it was important to find the “right fit” and will assign Alysia to a new counselor.

11/24/2010

2010-11-30T20:53:00.002-07:00

11/24/2010 Saw Dr. Barrios. Biopsies came back fine, slight inflammation but that is to be expected given the reconstruction that has been done. Alysia continues to have severe pain stomach to back; after a time she ends up very sick to her stomach. Alysia seemed to have some relief when stools were pure water, now that stools are more formed pain is increasing again. Going to recreate the watery stools she had after procedure with Dulcolax 2x/day and Glycolax 4x/day. Prescribing Zofran for nausea. Talked about Intestinal Migraines, this is a possibility but hard to know and the treatment is Amitriptyline and Alysia can’t have that; Dr. Barrios thinks the mental health meds may already be treating her but isn’t sure. To call with update Monday

Alysia's Procedure 11/16/2010

2010-11-17T14:59:00.001-07:00

Hi all

So, I had a bit of a time finding time to get anything out on what happened yesterday. It was a long day as the kiddo before us ended up with some major complications so Alysia ended up getting pushed back a bit.
We got some good information - her esophagus and her bowel both appear to be pretty open (for Alysia).

As for findings and solutions....
She has a huge amount of "watery stool" backed up. Now this baffles me as I would think if it's watery and her bowel is not strictured there shouldn't be a back up. The doc is thinking there may be a motility issue - she has grown a lot and maybe the bowel just doesn't know what to do now.
The doc did do a biopsy to check for inflammation, celiac, etc. We won't have those results until 11/24/2010.
I did ask again if this could be a dairy issue...possible, but we'll hold off on this until more results are back.

Needless to say this isn't the results Alysia wanted. She is very upset that she went through all of this and they didn't "fix" anything. Unfortunately she has reached the end of her rope and patience is out the window at this point (can't really blame her).

So, due to the biopsy she isn't allowed any exercise, jogging, or heavy lifting for 3 days...well, of course she has her solo dance in the recital Friday night but she won't be able to practice until Friday...thank goodness her dance teacher is going to work with her early Friday afternoon so that Alysia can feel confident enough to perform. Remember - she had to drop her 3 dance classes as she wasn't able to handle it, but they were able to keep her in the 1 on 1 class so it's really important that she gets to participate!!
Today she feels worse (due to the anestassia, endoscopy, colonoscopy, and biopsy...on top of the pain and issues she went in for to begin with). Her spirits are down and she's having trouble seeing the positive information we got out of yesterday.

I'm waiting for a call back from the doctor as I need the Acetaminophen-Codeine called in again, they have increased her Glycolax to 3 times a day so I have to have a new prescription for that so that I can have it refilled, and I want to start the medication for the motility ASAP.... Hopefully they call soon.

Anyway, hopefully we will have more information on 11/24.

Janet

Next Step for Alysia

2010-11-09T21:29:00.001-07:00

Hello

Well, let me try and catch up a bit since the last email...

Friday - Alysia's GI doc put her on Tylenol with Codeine to help control the pain until we can get things figured out. Honestly this has helped but it doesn't hold her the 6 hours it needs to and even with an Advil boost in between doses she is still in pain.

Sunday night - We increased Alysia's new anxiety medication (Kopolin) from 0.25 to 0.5mg 2x/day as she was still having severe problems. I think it may be helping more but time will tell.

Today - Alysia saw her GI doc again. Her urine cultures from 11/3/2010 and 11/4/2010 both showed no sign of infection. Her stool cultures from 11/3/2010 and 11/4/2010 were normal. Her abdominal and pelvic ultra sounds only came back showing anomalies in her anatomy (DUH!!) and her fatty liver (yep, still a problem). However, they still haven't gotten her blood work back and the office even called for the results while we waited and never got them. Needless to say GI doc was not happy... He had Alysia go for an abdominal and bowel x-ray today to see if that would show anything useful (haven't heard anything on that yet). He scheduled her for an Upper Endoscopy to check for strictures and obstructions - Tuesday 11/16/2010, check in at 2:15pm, procedure at 4:15pm.

Needless to say Alysia is a mess. She is sick of hurting, afraid of what they may find, and afraid they won't find anything. She is frustrated that once again she is sick over her birthday - yep, turns 15yrs old on 11/15/2010 (her Golden Birthday). She is frustrated she isn't up to having a big birthday party with everyone. She is afraid she is going to miss her dance recital, and afraid she won't get to go to the midnight premier of Harry Potter...

Thanks for the support we have gotten, it means a lot to both of us
Janet

Rough update on Alysia

2010-11-04T21:09:00.001-06:00

Hi all

So, this is a brief catch-up on what's going on. It's been a rough month but this week has been the hardest we've had in a long while.

Around the week of 10/18/2010 Alysia started really stressing the need to see her Psych doc sooner then the scheduled 11/16/2010 appt. I called and got on the wait list at one of the sites but the other you have to call every day or so to see if they have had any cancellations. Monday11/1/2010 Dr. Moore had a cancellation so we were able to get in. Alysia was struggling a lot with the anxiety which was bringing on the depression and self-anger. Dr. Moore agreed it was time to try something new so she decided to add Klonopin 0.25mg 2x/day to her medications. IF she does well and has improvement on the Klonopin then we can wein Alysia off the the Buspar by 5mg/day after 2 weeks. If after a week on the Klonopin Alysia continues to have anxiety problems we are to increase the Klonopin to 0.5mg 2x/days.

As you recall back on 10/20/2010 Alysia was taken from getting her Carafate 2x/day to once a day in hopes that by 10/27/2010 she would be off of it and use it only as needed.
Well, by 10/25/2010 she was having a lot of stomach issues which we watched and by 10/27/2010 I put her back on the Carafate 2x/day.
11/1/2010 I called and advised her GI doc of what was going on and he said to see how the Carafate goes but if she continues to feel bad or gets worse that he wants to see her.
Well, that night I ended up taking her off of all milk products (which is most everything she can eat) and her formula to see if that would help her stomach but the next morning I had to call again and advise she needed to be seen as nothing is helping. Originally they couldn't get her in until 11/5/2010 but later Tuesday afternoon they called and advised that they had a cancellation for 11/3/2010.

11/3/2010 Alysia saw her GI doc in the morning and he was concerned about the obvious pain she was in and that it has been going on for so long. He said allow her to eat as she wants as it doesn't appear to have anything to do with diet and that we can leave her on the Carafate for now but it really doesn't appear to have anything to do with taking her off of it either. He of course was baffled but ordered a bunch of tests: blood work, stool samples, urine tests, and an abdominal & pelvic ultra sound. Back to see him Tuesday 11/9/2010.
Well, we went straight from his office to the hospital to get all the samples taken care of while we waited to find out when she would have her ultra sounds. OMG - good think I have used this lab a lot in the past because they SUCKED this go around. They got the blood work ok - did a little fishing but not too much. However, the urine sample they took I had concern with as they didn't have her do a clean catch and there was MAYBE 4 drops of urine. We left them the stool sample but they told me that the doctor had ordered it (x3) which typically means they want 3 samples but there were no directions on what times the doctor wanted them done and I should call the doctor and find out. I leave a message for the GI office who calls me back later and states it doesn't matter just to make sure it's 3 separate times.
Later that evening I get a call from the GI office again and advise that the Abdominal and Pelvic ultra sound had been scheduled for the next morning. They mentioned that the urine culture came back looking odd and they weren't sure what that meant.
When I took the 2nd sample back to the hospital I talked with one of the techs that I knew a bit better than the earlier one and advise of my concern with how the urine sample was done. She read the order and agreed that it should have been done as a clean catch and asked that I have Alysia re-do it and bring it in Thursday morning before the ultra sound appt.
Later that night we took the 3rd sample down, thinking we were about done with all this back and forth stuff.
11/4/2010 we dropped the clean urine culture off thinking we were done and then went to have the ultra sounds done. Well...one of Alysia's biggest fears is having to have another catheter or VCUG done. Unfortunately when the nurse was talking about the tests she was explaining that the abdomen ultra sound would be done 1st since her stomach is empty (couldn't even give her her meds or anything before hand) and then we would take a break as Alysia's bladder would need to be full to do the pelvic ultra sound. To Alysia this was referring to having a catheter inserted and her bladder filled just like when they do the VCUG. Of course this is not what the nurse meant but Alysia went for ok to full blown panic in a matter of seconds. It took us about 1/2 hour to get her settled enough to listen about what was actually going to happen, get her to take her medicines, and stop hurting herself. The nurses were great with her and they were able to find Lion King movie to help calm her back down. I was able to get her to look around the room and acknowledge that there were no catheters and nothing indicating anything other than an ultra sound was planned. After about 1/2 hour she was able to let them start the ultra sounds and she did a great job. Of Course she melted down on the way home, but she made it through.
We got a message from the GI office that the lab had called and they won't run all 3 stool samples as they were all done the same day (which is what the doc had said) but the lab protocol won't let them run more than one a day... REALLY?!?!?! another mess-up?!?!?! This sent Alysia over the edge again, she just couldn't handle one more thing... I called the doc and advised of all the issues with the lab this trip and asked why 3 were needed.
I did get a call back this evening and explained it's to make sure they are getting the bast results possible but not to push it if Alysia wasn't up to it - they were pretty frustrated with the lab as well and could understand why she was feeling how she was. Alysia had already collected a 2nd sample so they said to go ahead and take that one in but not to stress over doing one Friday.
The NP also looked up the results of the ultra sound and the abdominal one shows signs of a fatty liver (I don't think this is really a shock) but she was going to have the GI doc look at it to see if he was concerned. She said that the pelvic ultra sound looked good and there were no cysts.
She also checked the urine culture from today and unfortunately it looks pretty bad but it also shows signs of contamination. The computer didn't indicate if they were going to culture it or not so she suggested that I call her Urologist in the morning to see what they think is going on. (cross you fingers it's not a bladder or kidney infections because I don't think Alysia could handle that news right now.)

Speaking of the Urologist...Alysia had her yearly check up with them 11/3/2010 (yet in the middle of all the other stuff). She had an ultra sound of her Bladder and Kidneys (of course they didn't have enough time to do the abdomen and pelvic ultra sound at the same time) and it looks good. They were happy to hear that she hadn't had any infections (at that time nobody had even thought she had one right now). They were frustrated that the hospital hadn't contacted them when Alysia had the Tethered Cord release surgery in 1/2010 as that surgery can cause a lot of issues for kids with bladder/kidney problems. They said that they can have trouble urinating and emptying the bladder which leads to more infections.... Now, I have to call them tomorrow and advise that she may have one and ask them to pull the results to see what they think...UGH!!!!!!

Needless to say, we are struggling so send all your positive thoughts and energy you can spare this way.

Hugs
Janet

The Good, The Bad, and The Sad

2010-10-20T18:07:00.000-06:00

Hi all

Rough day today. I ended up having to leave work in the late morning as Alysia still wasn't feeling better and actually feeling much worse - even running a low grade fever while on Advil and Tylenol.

She has been sick since about 9/24/2010 and if you recall she went to the doctor back on 10/4/2010 and they were thinking she had a sinus infection and put her on a 5 day antibiotic. She has never really been healthy since - even with finishing the antibiotics.

Today I was able to get her in to be seen at her primary care office. My question was if the strep test from 10/4/2010 came back showing Group B Strep as the symptoms she is having and the way she is acting are exactly as if she has it. To out surprise they never sent the culture out since they put her on antibiotics for the sinus infection....UGH! The doc did agree that it appears likely she has the Group B Strep again as all the "Alysia" signs are there, however she also feels Alysia still has the sinus infection. So, Alysia is starting a new round of antibiotics that will work on the Group B Strep and the sinus infection - Cefdinir for 10 days. Cross your fingers that it works!!!

Alysia also had a scheduled appointment with her GI doc this afternoon. This was a GREAT appointment. Even with being so sick she has gained 9lbs since 8/18/2010 and grown about 1/2" (give or take). Needless to say her GI doc is VERY happy with this. He is going to let her reduce her pump feedings from 7 nights a week to 6 nights a week!!!!!!!!!!! He is also going to taking her off of the Carafate and we will be able to just use it as needed....less meds is always nice! We go back in 2 months and if she continues to do so well he will look at taking her off another night.

Unfortunately, with being sick so long and getting worse her depression/anxiety/mental health issues are taking a hit. She is very down on herself and everything around her. She has not withdrawn (any more than what any of us would being sick) which is the saving grace right now. It's hard to feel good about yourself when you feel so crummy for so long.

Anyway, that's the update for now. If I don't talk with you before next Sunday - HAVE A GREAT AND SAFE HALLOWEEN!!!

Janet