Wednesday-Today we slept late, like until around 9. The night was good but Cody's temperature, blood pressure and heartrate was lowering during the night. It can happen from the steroids.
Lots of things can happen. He is up and down with his emotions too. He gets upset one minute then laughing the next. It makes you fidgety too. Dr. Kernan came to talk to me today. She explained that what he has been going through looks like the GVHD- the rejection disease. The blood in his stool confirmed it and we were forced to treat with high dose steroids. Steroids suppress your immune system and that is one of the things that caused the HHV6 virus to reach toxic levels back in June/July. We are monitoring that level daily. That was the reason for the MRI on Monday. We have been trying to treat the diarrhea, which was all probably the start of the GVHD and tried to avoid steroids because of his previous reactions. So far he is just emotional and fidgety and is having a few mood swings. He did eat a little by mouth today and he is tolerating the feeds again. We are going slow. He does not want to be here but we have to watch him closely. I went home today and got his cowboy hat so he could show the guy here. The picture is attached. He is worried about his cheeks getting puffy which they are but I explained to him that no one cares, they just want to see him happy and healthy. Let's hope he has a good night.
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