Saturday, November 28, 2015

Days +52/+53

The good news is that Raul is now negative for the HHV6 virus, and his CMV level is down! He will remain on the Gancyclovir for three more weeks (6 weeks total), as we want to get rid of it and keep it away! The bad news is that his BK virus level has gone up significantly, so we need to try to treat it. Raul cannot use the medication that might be most effective as it would likely cause irreparable kidney damage, so he has to use the other option. He is getting Cipro and Leflunomide nightly. This is a cocktail often used for those who have had kidney transplants, and it was recommended by Nephrology. They will watch his viral levels and he will stay on the medications as long as necessary. 

It is possible that the BK virus is keeping his kidneys from healing, but the Nephrologist said that would be more likely at an even higher level (and the only way to confirm would be a kidney biopsy, which is not a good option for him). The doctors are running a few other tests to look for other causes, and it sounds like the things they are looking for would all be treatable, which is good! We are also planning to go back to our regular 4 day a week dialysis schedule, which will be nice, as we only got one day off this week!

Raul is still having his high fevers and is more tired than usual. It is possible the high level of the BK virus is making him feel icky, but we don't know for sure. We did get him onto his floor mat for about 20 minutes today though, and yesterday I got him to sit in a chair for about 15 minutes. We need to try to get him up and taking deep breaths to help get him to not need the blow by oxygen while asleep. We have gotten his formula up to 40 ml/hr, so hopefully he can get off TPN soon! He still throws up with his fevers, but he doesn't seem to be throwing up any more often with the increased formula. 

Last night Raul and my dad played with his fake snowballs for quite a while

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