Need to Vent
I was reading the consent form for Connor's thymus transplant, and I am scared. First, it says that Complete DiGeorge is a fatal disease if left untreated. The bone marrow transplant only has a 60 percent chance of survival and the thymus only a 73 percent. I guess its finally hitting me that I may lose my baby boy. He has RSV, which in a normal child can be fatal. He has no way to fight it. They cannot get him off of the oxygen for more than a few hours at a time. I will be talking to Dr. Markett at Duke on Monday. This will be a phone conference. I am hoping that they get the Medicaid approval soon and get him transported. Once we get down there it will be another month before the transplant. They will have to find him a thymus and then spend 2 to 3 weeks testing it for infections. I am scared. What am I going to do if my baby don't make it?? We have decided that we are going to donate his body to science. He has such a rare disorder that maybe he can save the life of another child. I never thought that I would have to think about things like this. I am terrified. I cannot believe this. I don't want to lose him. I love him too much.