Sunday, April 5, 2009 Another Visit And More Unwanted News

We went to see Shailee today, she was still stable, which is what we want. Shailee is still intubated (breathing tube down her throat). She didn't get any lab work done today, they are waiting until Monday to do her chest x-ray, ekg, and all the other blood work they do. The pediatric surgeon gave the ok to give Shailee a little formula in her feeding tube tomorrow to see how she will handle it, so hopefully everything will remain ok and she will finally get to try it out.
We met with Shailee's endocrinologist for the first time today, to find out that they are concerned with Shailee's pituitary gland and its ability to produce her body's hormones. He feels that she may have a pituitary deficency. He told us that her Cortisol levels are good, but her thyroid levels are low, and her growth hormone levels are low (they should be between 20 and 40 and hers was 6). He wouldn't give us alot of information at this time b/c there is nothing set in stone with this since she isn't feeding on her own yet and she is getting all of her nourishment from an iv. he is going to do another thyroid level tomorrow, but he will follow her more closely once she is feeding on her own and they are able to see what all her body can do on its own. We were very upset at the intial news of this, but once I got home and did alot of research on this problem i have found that all the deficencies that are or can be caused from this are treatable in one way or another. I just hope that it doesn't turn out to be something that she is going to have to deal with later down the road but it is another time where all i can say is that we will have to wait and see. I really am starting to feel like all i get done doing is waiting and waiting, and it is hard b/c there is nothing that i can do about it, or for our daughter but sit and wait. Right now the main things they are worried about getting taken care of first are her heart and her respiratory issues so she can be off of the ventilator and breathing completley on her own. That is pretty much all there is for today, so now i sit and wait since that is all that i can do. I will update again as soon as i hear more. Here is a new pic of Shailee from today.