Days + 57 to +61: Getting Closer

Yes, we're still here. The very tentative plan for discharge is Friday. The main issue that is keeping us here is that one of the drugs that Ezra takes for graft versus host disease needs to reach a certain level in the blood for it to be effective. The level has finally started to go up after several dose increases, but it still is not quite where they want it. The doctors have called Ezra a "Super Metabolizer." Not exactly an area where we want him to be an overachiever. Maybe this explains why we've always had trouble getting him to gain weight. In any event, now that the level has gone up a little, his doctor is willing to discuss discharge for later this week.

If all goes well, Ezra will be discharged and will continue his recovery on an outpatient basis. He will need to come to clinic here several times a week for long days of testing, medication and transfusions. This schedule will continue for many months. And at the slightest sign of anything problematic, he will need to be re-admitted. But at least we will be going home in between and that's all that matters. Ezra will also need to remain in isolation at home for a long time, but should be allowed outside to play at our house (swingset has been ordered!). We are waiting to learn the specific instructions and limitations.

Leaving can't come soon enough for Ezra. While he remains an amazing trooper stronger than any of us, he is really getting cabin fever now that he is feeling better. One of his obsessions is Rube Goldberg machines (really complicated machines that accomplish a simple task). He watches videos of Rube Goldberg machines on You Tube and he has now taken to creating his own, which basically consists of setting objects up to knock down. All. Day. Long. Time to go. At least he got a visit from Cookie Monster today (well, through the door) and Ezra slipped him a cookie under the door so that they could munch together.