Sunday, August 25, 2013

Days +1 and +2: Long Days

Welcome to the positive days. Now that we made it through transplant day, we start counting up. Each day gets us closer to the day when Ezra will hopefully be cured. The next couple of weeks while we wait for his neutrophils to come in are expected to be the most difficult and Ezra will feel the worst.

He is feeling awful already. Mouth sores, terrible stomach pain, vomiting - he doesn't know what to complain about first. He has a PCA, which we use as frequently as he needs it, and is receiving medication to help alleviate his symptoms. We are trying to find the right dosing and schedule for all the meds to help him feel better. He has been sleeping for large parts of the day, which is really better off because he is so uncomfortable. Ezra also started on TPN (IV nutrition) today since he hasn't been able to eat more than a few bites and his tummy needs a break.

The symptoms are not expected to resolve until neutrophils come in. It's hard to be patient waiting for those cells to appear when he is suffering so much and the days already feel very long. Transplant strips you down to your core - we all feel that way. Then it is a long road  of healing and rebuilding.

Ezra is feeling worse than he ever did with his first transplant. Then again, at this point during the last transplant we were feeling like something was wrong because everyone kept saying he was doing great, but we knew he was supposed to be sicker. Ended up that we were right and the chemo didn't do its job last time. So, we take a little comfort in the fact that his sickness is in part a sign that the chemo has done what it is supposed to, clearing the way for the donor cells.

Ezra has been receiving blood and platelet transfusions from all of you amazing donors! We thank you from the bottom of our hearts for making sure Ezra gets blood products given with love!

This is one of the few smiles we've gotten out of him the past couple of days - of course when launching another handmade rocket!