Day +59: oral cyclosporine

Dr. Horn came back on service today. She's the doctor who was attending for two weeks when Mina Brigitta was at her lowest point, and we like her very much. She has a lot of knowledge, and she doesn't hold anything back when she talks to us. But her explanations are always very clear and concise without too much medical shorthand. What we like best is how carefully she examines Mina Brigitta, and how she asks us detailed questions about what and how she's doing. Especially with young children, I think it's really important to observe them closely because they can't tell us much about how they feel. When they were talking about sending us home before, I knew that Mina Brigitta wasn't ready because she was very clingy, wasn't eating much, and generally didn't seem like herself, even though physically she looked great. She couldn't tell us, but she must have been in serious pain based on what was going on in her gut.

Now it's almost the opposite: her spirit is way ahead of her body. She really wants to eat, but struggles with the part where she has to actually put the food in her mouth and swallow it. She wants to walk around outside in the hallway, but she's so wobbly and swollen still that she doesn't get very far. But the body is healing, and it will eventually catch up. I'm more optimistic now than I've been in a long time that we might actually get to bring her home.

To that end, they switched her to oral cyclosporine today. She took her first dose at 4 PM, and has to take it every 8 hours on the dot. Cyclosporine is the hardest drug to switch over, because it tastes horrible and makes lots of kids throw up. Mina Brigitta told me on the phone today (talking on the phone is another milestone, by the way) that it was "hot", which I suppose is the best word she can come up with for "terribly bitter". She took it like a trouper, though. If all goes well, they said maybe we can start thinking about coming home next week, maybe even as soon as Monday.