Friday, October 16, 2015

Day +10

Today Raul's WBC was .3 (yesterday .2 and prior to that either .1 or <.1), so we are starting to get more optimistic that he is truly getting his counts back! He is still far from normal, but is going in the right direction! 

Raul's kidney/liver numbers continue to rise, so the BMT team decided to treat his liver issue as Veno-Occlusive Disorder (VOD). VOD is a clinical diagnosis, but he does have all the signs other than the ultrasound findings. It is a potentially scary diagnosis, but the medication they will use has a pretty high success rate (it is still in the trial phase in the U.S., but widely used in Europe).

He only held onto a little fluid today, but because of starting the VOD medication they will do dialysis tomorrow. The high BUN level he has causes the platelets to not bind together properly, so we want to reduce the BUN to reduce his bleeding risk since the medication for VOD can cause bleeds. The course for the medication will be about 21 days, unless he has any side effects, in which case it can be stopped at any time. The good news is that it can start working in a matter of days, which would be great! 

Despite his kidneys and liver not being very happy, his personality is actually starting to come back! The past two days he has been awake more, and today only took a one hour nap during the day! He was also finally back to smiling and playing actual games on his iPad not just watching videos. He still isn't quite up to playing with his toys and doesn't like to get out of bed, though he ended up sitting in a chair for about an hour this afternoon! So it seems like we are headed in the right direction, and we are hoping the medicine will kick in quickly so he can start feeling better for his birthday (the high levels also make him more itchy and irritable)!

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