Tuesday, September 10, 2013

Days +16 to +18: The Hard Work of Healing

Each day we have been seeing a little more improvement in how Ezra feels. His biggest complaints are still stomach and bone pain. Today he was the most playful he has been since we started this process. It is so wonderful to see his personality coming back (and it's more fun too!). He had not been willing to participate in the services and activities available here for the kids when he was feeling so sick, but today he finally allowed the music therapists to come in and jam. 

Ezra's counts have continued to be strong. The transplant team's focus has definitely shifted toward what has to be accomplished in order for Ezra to be discharged. Several medications have been stopped or are being administered less frequently. The pump is slowly decreasing in size. We also started giving one medication orally. So far, Ezra is taking it like a champ. 

For Ezra, the big challenge will be learning to eat and drink again. He needs  to be eating and drinking fairly normally before discharge can happen. He is still on IV nutrition. Once he is able to eat and drink a little on his own, they will stop the TPN, and then hopefully his appetite will kick in. Chemo affects the taste buds, and we can tell that foods taste and smell differently to him. He also says he is afraid to eat because it will make him throw up. We are starting very slowly with this process. Small bites of chicken soup have gone down ok so far and we will go from there.

We had a short and furry visitor this morning. Believe it or not, the hospital uses beagles to sniff out bed bugs, mites, and other nasty stuff. We were shocked that a dog is allowed in the isolation rooms, but apparently it is worth it to have a beagle's expert sniffing. Ezra slept through the visit and we were glad the cleaning staff came by right after our cute, but not-so-sanitary visitor left. 

We are praying that things continue on the right track. To think that discharge might be in the near future seems too good to be true. We're trying to not think ahead too far because we know things can change in a flash. We are just taking each day as it comes and hoping the next will be better.