Friday, September 13, 2013

Days +19 to +21: Ups and Downs

As we start week 3 post-transplant and as Yom Kippur is upon us, we are feeling so much gratitude. We are thankful that, so far, transplant number two is going as well as we could ask for at this point. We are also so grateful for all the family, friends and complete strangers who have been supporting us through this journey and keeping us strong so that we can be strong for Ezra. All of the delicious meals and special treats delivered to us, the fun gifts for Ezra, and the messages and prayers for better days and good health are always what puts a smile on our faces and helps us to stay positive. So thank you all so very much.

The focus of this week has been re-introducing food and drink as part of Ezra's life. It seems like it is easy to forget about food when you don't feel well and your body gets nutrition support intravenously. Ezra is very slowly trying more bites of food in small amounts. He is definitely scared that eating will make him throw up, plus he is still having stomach pain, so eating is no easy feat at this point. He can take his time as long as we keep taking baby steps forward.

Ezra's counts have been bouncing around quite a bit. He has some days where his WBC is low, although his neutrophils have remained in the normal range. When his counts are low, he has been receiving a dose of a drug that stimulates neutrophil production because the doctors want to keep his counts on the higher end at this point to keep him protected. The only downside of that drug is that it causes Ezra to have bone pain, which in turn means that he needs more pain meds. We need to start weaning him off the pain medication, but haven't been able to make much progress.

The other issue that has cropped up is that he is having diarrhea again. So far the tests are coming back negative for any bacteria, parasites, etc. For now, the belief is that the diarrhea is likely from a combination of the re-introduction of food and possibly withdrawal symptoms from the small amount of weaning we have done on the pain meds. The plan is to give him more time and see what happens. 

The one area of definite improvement is in Ezra's energy. He has been more active and playful the past few days. He has been walking around more and even had a dance party (check Ezra's Facebook page for a video clip He is also working hard at PT and OT to regain some strength. 

G'mar chatima tova!