Saturday, May 05, 2012

Day +28

Yesterday Jacob had his endoscopy and biopsy, and the results just came back that he has grade 1 gvhd in his stomach and colon. It is a 4 point scale, 4 being deadly and 1 being mild. That explains why he has been so nauseous and uninterested in food. He will start treatment for it today and should bounce back within a couple of days. The Dr. said we could start to wean him off his tpn on Monday. Today he finished his morphine drip and replaced his continuous tacrolimus infusion with 3 boluses throughout the day. This will free him off his line more often. We even got permission to take him out of the hospital for a few hours to go for a walk or drive. I think he will really enjoy that if he is awake enough. He's on 3 antimetics staggered so that he gets something every 2 hours. That will hopefully keep his nausea under control, although it also keeps him in a constant state of drowsiness. The chimerism test was sent out yesterday and they said we should hear back on that by Monday. Please continue to pray with us that he is 100% donor cells. That would mean a cure for him and no chance of his old cgd cells taking over the new marrow, like what happened during his first transplant.

Also Jacob had his ng placed yesterday which made him so very sad. We invited a little 8 year old patient who has one to come in to talk to Jacob about it. She said she liked hers because she didn't have to taste the medicine. She also told him she could still play around with it in. Jacob smiled while she talked to him. I think it was very therapeutic.

Here is Jacob enjoying one of his cute new pillow cases.

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