Day +29

Raul got the day off from dialysis today. His weight was up, but his labs weren't too bad. We are going to try to skip tomorrow too depending on how he seems in the morning. The doctor doesn't really think we will be able to skip two consecutive days at this point, but we want to try since we are hoping to cut back on the number of dialysis days for when Raul is discharged. We are currently at 5 days a week, but getting down to at least 4 would be ideal. 

Today we increased Raul's formula to 15ml an hour, and so far it is going well. Speech therapy also came by and gave Raul some thickener for his drinks as he was coughing basically every time he took a drink. So far he has not been coughing with the thickener, though he doesn't seem to be a fan of it. 

The official report is back on the skin biopsy, and they said it was not GVHD of the skin. They said there was inflammation that looked like either something viral or a medication reaction. Because of that, the doctors pulled his steroids. Depending on what the issue was, the symptoms may come back. It is also possible that he had GVHD somewhere else, like the stomach. I was a bit sad to give up the steroids since they have made him feel so much better, but of course we don't want him on them if he doesn't have to be as they can increase the infection risk.

School and PT went pretty well today. Raul's bandage change was a bit rough, though. He needed both central line dressings done and his whole body. Despite all his normal meds., as well as a second dose of the pain med. and another anxiety med., he was still quite unhappy. He has gotten to really hate the central line dressing changes, especially because he has some open skin in the areas that needs to be cleaned.