Everyone Please Pray for Simon
I'm going to start this out by saying that we are still 95% donor cells and the breakdowns are even higher so that made me very happy. They also said for his age his flow cytometry is normal. That is where they look to see if he has the cells he needs to get his immune system going. So that was great to hear. On the flip side the last few days have been rough to say the least. He is still having 12-15 diapers a day of diarrhea and is having stomach pain the last two days. Nothing is staying in him and now he has a head cold. I have been doing everything to try and support him fluid and calorie wise but its not helping. He cannot tolerate the feeds b/c his stomach starts to ache and he has thrown up a few times as well. He has lost weight and today, looked pale and sick to me. He still trys to play and have a good time though but it really wipes him out. Hes tired. After two days of discussion and trying to figure out the best plan tomorrow we are going in for IVIG and a scope. He will be put under for the third time. They are fearful he has GVH is his gut. This is very scary to us as if it is that, he will have to remain on cyclosporine and maybe steroids for very long time, maybe years. This will not allow his immune system to work normally. They are also looking for disease in the intestine and I have asked for him to be tested somehow for microbacterial infection. Nemo boys are proned to it. I ask this of all of you, tonight at prayer time please say a heavy prayer that Simon does not have GVHD, that he shows no sign of a new disease and that maybe, maybe its just a viral thing he has not been able to kick. I honestly thinking of the possibilities has put me into survival mode of function and I cannot bear this little man to suffer any more setbacks. Please pray for complete healing along with all the other prayers. We have not slept much this week and I am hoping we can spend the weekend catching up on some of that and relaxing with our whole family at home. Simon will start iv fluids and may be put on TPN tomorrow, again. We need your prayers. Otherwise, as typical Simon, he is in good spirits and playing and talking like the trooper he always is. God Bless. Tracy
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