Home routine

Pretty happy kid

The boy's new backpacks

It definitely takes a couple days to get back into the home routine after we’ve been at the hospital for a while. And it’s always daunting when we go home with a huge list of new meds and need to figure out when to take each one and how Carter responds (gagging, etc) to each of them. Luckily, we’ve had a lot of practice, so this homecoming wasn’t nearly as scary as after the first round of chemo. The nurse came over today to show us how to administer a new IV med we’ll be giving Carter. This is a balloon within a capsule and basically deflates while infusing. It also takes over an hour, so this will add to our already crazy mornings of taking care of Carter. Matt and I keep reminding each other that Carter’s list of meds will slowly decrease over the next six months, and we can’t wait for those days. We also think about how slow the past four months have gone by though and wonder if it will be the same.

Carter woke up in the middle of the night last night and was calling out for Matt and me. Matt went into his room and realized Carter had thrown up in his bed. We had to strip him and his bed and give him a sponge bath. Luckily, he has remained fever-free since transplant. And finally, we got him back to sleep. Then, Matt and I both stayed awake stressing about why he got sick and where did it come from. He slept all night and was fine though. This morning he was perky and wanted breakfast, played with Bennett and took his meds just fine. I (hesitantly—because I don’t want to bother them) called my friend and asked if she’d bounce this all off her husband (one of Carter’s doctors). I told them Carter had eaten chicken soft tacos for dinner and he hadn’t eaten chicken since in the hospital a week ago when the next day he had diarrhea. The doctors in the hospital had told us then to wait on chicken for a few more days, but obviously it was still too soon. My friend and her husband thought it was probably just something Carter ate. They also told us his meds are absorbed into his body within the first 30 minutes after giving them. This is something great to know for the future. Our biggest concern last night was that five hours hadn’t been long enough for Carter’s anti-rejection drug to remain in his body. But Carter acted great and ate the rest of the day today, so we will steer clear of chicken a while longer!