Days +48, +49, +50

We are now on day +50 and have been in the hospital 71 days. Raul's WBC and ANC had started to drop a bit (it is normal with the low dose chemo for them to go up and down for a while), so he got one dose of GCSF on Monday night. He got blood overnight Sunday and platelets overnight on Monday (the platelets were for a nose bleed, his level was actually okay). He will most likely need blood again on Friday during dialysis (they prefer to do it during dialysis so that they can pull off the extra fluid and just leave him with the cells).

His CMV level was down at the last check, which was great news! He is still getting the antiviral medication, and they will check his level again at the end of this week. His line cultures continue to be negative, and we have been lucky that his PICC line is still working. We may, or may not, go back to the Hickman. This line will likely not work as long as we need it to, but we may be able to place a second PICC line instead of doing the full Hickman. We have been able to cut back on his TPN as he is now up to 30 ml/hr of 1.5 calorie formula! His goal is 45 ml/hr, so we are getting close. He is still having high fevers, up to 105, and lots of vomiting when he does have the fevers.

Raul started needing blow by oxygen over the weekend, and has continued to, though mostly when sleeping. He had a chest x-ray Sunday night and a chest CT Monday afternoon. Amazingly, his CT actually looked better than the last one! He nodules that may have been infection have mostly cleared. He did have some of what was most likely atelectasis, which is not surprising since he is not sitting up as much right now and not taking enough deep breaths. We have been trying to think of games/activities that will help him take deeper breaths. They would normally consider using the high flow oxygen again, but since he has been having so many nose bleeds that isn't really an option. Though thankfully, it has now been over 48 hours since his last nose bleed!

On Monday Raul also had a repeat kidney ultrasound now that we are 6 weeks into kidney failure/dialysis. Thankfully, his kidneys did not look worse, and his bladder actually was somewhat distended with urine (a good sign since that means he is peeing even if we can't always tell due to his diarrhea). One kidney was the same as before, and one was slightly smaller. However, they were enlarged originally, so a little bit of shrinking would be good, we just want to avoid significant shrinkage! The nephrologist still thinks that as we get rid of more of the kidney toxic meds., that he will get at least some kidney function back. And she said that you don't actually even need THAT much kidney function to be able to come off dialysis, which is good to know! We also got the good news today that his Voriconazole level is high enough that we can stop the other antifungal that is very tough on the kidneys!

Kissing his airplane he got after his CT scan