Thanksgiving Night

There is not really any exciting news to report tonight. The last fews day have been a bit discouraging after all the good days we had last weekend. Shay had a rash break out over most of his body. They are not sure at this time what is causing this. Shay has not been very alert for the last few days. Its a bit of a bummer going back into this mode because it was nice being able to communicate with Shay. Shay has been experiencing some pain so they are having to up his meds which makes him "out of it."  The x-rays are showing improvement on his lungs but he has not reacted well to breathing without the vent. I am not sure when they will take another shot at taking him off. Shays liver and kidneys continue to be a real concern. His bilireubin levels in his liver were in the 30's today which the way I understand that is pretty high. They have mentioned doing a biopsy to see what exactly is going on. Shay's kidneys are not showing much improvement at this point either.

We are not necessarily taking a step back but it just feels like we are not moving forward. Basically we are in a situation where we need to realize that this thing is not going to be a race but rather a marathon. We are going to have to start mentally preparing ourselves for a very long haul. I would be fibbing to you if I told you that I wasn't disappointed about the lack of progress. I was anticipating seeing Shay off the vent and talking by the time we left but it looks like we are on a different time schedule. Never the less I am eternally grateful that Shay is where he is at. It definitely beats the alternative.

Shay is such a neat kid. Shay has had two bad days and you can notice the discomfort on his face. When he was heavily sedated he appeared to be in a coma but now he is in and out and you can get him to respond. Despite his situation he continues to stay strong. This afternoon his Aunt Kelly and Aunt Carol asked him if he was doing okay and he could not muster up enough strength to focus his eyes on them or nod his head yes but he managed to raise his thumb to give them the thumbs up. I wish I could have that kind of positive outlook when I think "life has me down." I love this kid. He is my hero.