Wednesday, December 23, 2015

Days +78/+79

Tomorrow will be our 100th day in the hospital, and things are largely at a standstill. His fevers just won't quit, and they have been looking everywhere but we have not identified a source for his long term high fevers. The past few days they had been getting worse again; almost constant, which also causes gagging 24/7. Yesterday one of his blood cultures from Monday came back positive for Staph, so we are assuming that was the cause of his worsening fevers. We restarted two more antibiotics yesterday, and today he went about 8 hours between doses of IV tylenol! 

Inflammatory issues like infection can also worsen aHUS, so we think that may be happening. This may be the reason his bilirubin has been going up again causing him to be more jaundiced. He is still needing platelets most days, and blood every few days. We are hoping that this will improve over time with the medication for the aHUS. 

Raul is still peeing, which is great! And we were surprised today when his kidneys had actually cleared some of his Vanco from yesterday, so he even had to get another small dose today (last time he was on it they only gave it after dialysis, as his kidneys weren't filtering it). He will have dialysis tomorrow, then get Friday off for Christmas. 

Our family is here for Christmas, and Raul actually demanded to get dressed today before his visitors came! This is big for him, as lately he has refused to get dressed at all! He is also asking more frequently to get out of the hospital after our break the other night, and we are all happy that he is looking forward to that. The plan is still to go out for about four hours on Christmas Day, which I think he will love! He is quite deconditioned, so he will need to rest a lot, but just getting out of the hospital is such a nice change of scenery.

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