Wednesday, March 19, 2008

Back In The Flow

Last night when we got back from the hospital it felt as though we had been gone for a long time, instead of just overnight, but by this morning it feels as though we hadn't been gone at all. Right back into the flow of issues, minor crises, and tasks to be done.

The surgical procedure went well, but was inconclusive. They did not find anything specific, some anomalies, some possibilities but no answers. Now mind you I don't want them to find horrible problems, but it would be nice for them to be able to point to a specific problem and say "that is what is causing all the pain and suffering and here is how we are going to fix it". Instead we have some possible leads to follow but nobody really seems to know how to fix the problem since they can't really find the problem, although everyone agrees that there is a problem. How is that for fun?

Some background on all this. My 3rd pregnancy was a huge surprise to everyone, myself included. We had our two big boys, 9 and 7 at that point, and we were in the final steps of adopting the sibling group of 3 that we had fostered for 4 years. I was going back to work full-time for the first time in five years, and then God laughed. So we were pregnant again, as I had had a number of miscarriages before the boys came along we didn't run right out and tell everyone our glorious news.

At the first ultrasound, we got bad news, this would not be a viable fetus, as the development was all wrong, the organs were outside of the abdominal sac and there were major structural deformities. We were sent to a specialist. 2.5 weeks of nervous anguished waiting and the specialist says, oh no this baby is physically developing okay but she won't live long once born. We were like WHAT?!?! Turns out they were seeing inflammation in her bowel that led them to diagnose significant Cystic fibrosis and if the inflammation was that acute at this early stage of development then the baby would not live out its first year. None of that made sense to us, as there was no history of CF on either side of our family. My husband, the statistician that he is, began to question the doctor on his numbers and called into question his certainty. At which point the doctor got angry with us and announced that if we weren't going to follow his recommendation to terminate the pregnancy than he washed his hands of us.

We left that meeting totally stunned and in shock. There was a lot we couldn't process, but we both knew that we weren't going to terminate so we left it all in God's hands and moved on. It was scary, I had all sorts of deep, dark scary moments of unfaith, but always knew that whatever happened we would deal with it. After all that it was an uneventful and relatively easy pregnancy. I mean no problem, right?, 5 kids under the age of 10, 3 of them with special needs and a full time job and pregnant. But yeah, it was a good time for our family.

In the delivery room you could hardly move because there were so many specialists waiting around for this baby so they could do specialist things. But when she was born she was fine, no breathing issues, no deformities, nothing that anyone could find wrong, except for some difficulty keeping her temperature regulated. They sent us home on day 3.

On day 4 we were back in the NICU with a dying baby who had sepsis and needed emergency intervention. But we got through that and moved on with no apparent long term effects. Then at 4 months she was back in the hospital fighting for her life with major bowel infections. They scoped her and found many, many bleeding, infected ulcerations and she was diagnosed as being allergic to soy and was put on a special diet, as was I, since my breast milk was her only sustenance until she was over a year old when they let her have orange and yellow vegetables. Still, no one could tell us exactly what was wrong, one specialist said she had immature bowels and would grow out of it by age 2. I asked if she didn't grow out of it by then, what then? And he said, oh they would diagnose it as something else. Very reassuring, I assure you.

The first 2.5 years of her life she went from specialist to specialist, she had severe asthma and horrible eczema, we had major reflux, projectile vomiting, failure to gain weight, constant diarrhea, and yet we had no clear diagnosis or plan. One doctor would start her on something and another specialist would argue with that one and our heads were spinning. She had trial medications, she had test after test, but still no diagnosis.

Our pediatrician was the most wonderful support and gave me the best advice through this. He said "don't treat her differently than the other kids, if she wants to do something let her, let her grow to her own highest potential, do not coddle her just because she is ill" So we just acted like we had a normal life and that it was normal to do all of the hyper sterility things associated with her food prep. Somehow we did lead a normal life, we went camping (in a tent) across the country when she was 17 months old, for 6 weeks. She went to day care, she had birthday parties, she begged to signed up for dance, etc.

Then at around 3, many of her issues just subsided. We stayed on a very restricted diet and she still had asthma treatments on a daily basis as well as allergy treatments, but we went into a wonderful period of remission. Then when she was 6 or so she got worse, she became hyper allergic again to foods, her asthma got worse as did her eczema and she got pneumonia and then mononucleosis. Again with the specialists, again with the no answers, again with the remission of symptoms at about 7.5 years.

Then we went into a very nice long period of relative normalcy. I thought, ah ha that specialist was right, she grew out of it. She could eat almost everything her peers did, she started to grow to a more normal height and she became obsessed with dance and soccer and living life.

Then about 3 years ago, at age 11, things started to slide downhill again. She became unable to digest many forms of protein, her reflux became a serious issue. She had constant diarrhea, intense abdominal pain and vomiting episodes 2-4 times a week. At the same time she intensified her dancing, began performing in community theater and auditioned into the Youth Performing Arts High School as a dance major.

Which brings us up to date. Nobody knows for sure what is wrong, why her system cannot absorb food well. The pain, diarrhea and vomiting remain a mystery. Everyone agrees that they are there, that they are not symptoms of an eating disorder, etc., but nobody can tell us why this happening and more importantly what to do about it. She is missing way too much school. There are many days she can't dance and dance is her life she will tell you. She has a restricted social life because she is overly tired and often fighting off minor illnesses as her immune system is so effected she seems to get every cold etc that comes along. And she has a very restricted diet and a weird eating schedule, she has to eat 5-7 light meals a day (try fitting that into the school schedule) All this at a time when the most important thing is to fit in socially.

So we wait our 3-5 days for the test results and we hope that this time finally these new specialists have a clue for us.

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