I really do not know how to answer that anymore. I sometimes see improvement, but lately I wonder what I have done with my decisions. His breathing is still very labored so I am beginning to think that Dr. O'Mara was wrong that he would see some improvement in quality of life with just the tracheostomy. The peg tube placement went fine, so Tracy will get calories even if he does not feel like eating. It has been 40 days and so far we have just seemed to make things worse for Tracy without much reason beyond a lung transplant to be better. From what I have read, it is likely that Tracy will not be accepted for the program until he gains about 20 pounds and that is the least of our worries. His history of CLL and also the ankylosing spondylitis may make him not eligible either. I think the diagnosis of Graft vs Host disease might hinder his chances also. I think one of the reasons the doctors at Strong have been dragging their feet on him getting on the transplant list is that they do not think he will be able to get on the list. It could be four weeks before we even know if they will consider him for evaluation for transplant. Then there is a lot of testing that has to be done that would take several more weeks. So at best we do not know if he is a candidate for another 6 weeks. Then it could be months before there is a match.
Tracy is also going to have to really work to get better. I do not know how much work he is wanting to do. So far it does not seem like much. He is still very weak, but laying in bed is not going to help that. I really can not tell if he does not want to be better or if he is still just sick. I don't want to do tough love and start sleeping at home if he really needs someone up here.
Apparently his white blood count went way up yesterday and that is a good indication that the infection is not any better. That will also keep him off of a transplant list. He has lots of confusion during the night making sleeping impossible for us both. The confusion could either be drug related or infection related.
We both have said that we would not want extraordinary life saving measures if there was no hope for quality of life. I wonder if I went too far.
