Saturday, September 28, 2013

Days +30 to +37: A Hard First Week at Home

Our first week home has been a challenging one. We had hoped that Ezra's pain would magically disappear once we were in the safety and comfort of our home. This has not been the case at all. Ezra is still in a tremendous amount of pain from his stomach and his legs. He  spends most of his days on the couch crying and whimpering in pain. He is still on heavy duty pain medication. The plan for now is to wait and see a little while longer in hopes that he starts to improve. Investigating his stomach pain further will mean invasive testing, and no one is in a rush to do that. His leg pain is likely a combination of his bone marrow hard at work rebuilding and muscular deconditioning from all the time spent in the hospital. We are working on getting him evaluated for PT, and trying to get him doing more physically each day. Other than that, we feel very helpless in our ability to alleviate his pain. Watching him suffer is wearing us all down.

Getting Ezra used to going to clinic again has also been a challenge. As one of his doctors put it, Ezra has a bad case of "hospitalitis." Very true. Who can blame him? He also has been having anxiety about his port being accessed again. He forgot what it feels like after having a central line. By our third visit this past week, he was getting better at it, and hopefully the whole process will begin to be more routine as time goes by.

On a positive note, Ezra's counts have been stable, and he has been able to avoid needing the drug to stimulate neutrophils this past week, which is great news. His platelets and hemoglobin have also been good and he has not needed transfusions in a while. We thank each of you who donated blood or platelets from the bottoms our hearts. You have all played a critical role in Ezra's healing, and we believe there is a little part of all of you inside of him. Please consider donating again in the future as there is still a floor full of other children in need of blood and platelets.

Despite the overwhelming pain, we've gotten Ezra to spend short bursts of time outside in this glorious weather. Watching him rediscover his swing set (a/k/a "Ezra's Park") was joyous. A huge smile spread across his face with that first push of the swing. He was so happy he started humming and singing. It felt like each swing was chipping away at the gray days of the hospital. We watched him approach his slide with trepidation and then rejoiced when he reached the bottom and shouted triumphantly "let's do that again!"

Playtime is short as Ezra is weak. He lost a substantial amount of weight during the transplant process. He is eating, but with the pain he is feeling, his appetite is not back to normal. Transplant patients require more calories to support all the re-building of cells and tissue that has to happen. Between that and his pain, eating is a focus and a challenge. The days are spent getting Ezra to eat, take his meds, and attempting to alleviate his pain as much as we can.

Chimerism will be checked again soon - likely this week - so please pray that he remains 100% donor cells. And that he gets some relief soon from the pain.