Day +23: still some ups and downs
The downs: Mina Brigitta threw up about 15 minutes after taking all of her oral meds this morning, so she had to repeat some of them. She's pretty good about taking them, but the cyclosporine is an exception. They did warn us that it tastes really nasty and sometimes makes kids throw up. She was playing with her babies, but wanted up right away after taking it and didn't want to be put down. I soon figured out why. We decided that we need to get her on a schedule where she's had something to eat before taking her morning meds. Also, her liver function tests were higher over the weekend, including the bilirubin, which is the most important and dangerous one but the one which had remained at normal levels until this weekend. And she's become totally addicted to TV; she threw a major fit today when I wouldn't put on Jungle Book for the third time. Our DVD player isn't working at home, so it'll be interesting to see how she reacts.
The ups: her bilirubin came back down to normal on Sunday, which was a big relief. It never got anywhere near the panic level, but it was outside the normal range and rising. Veno-occlusive disease usually happens earlier, but not always. Hopefully it will stay down tomorrow. Also, her red cells and platelets rose for the second day in a row. It looks like she's going to make it through this without having received a single red blood transfusion, which is amazing (thanks for all the blood, Mr. Donor!). She's received several platelet transfusions, but maybe she won't need any more of those either. Also, she drank about 24 ounces of milk throughout the day, which is far more liquid than she had on any other day. Everything is looking good for a Monday release, except...
The apartment isn't quite ready yet. Keri and her girlfriends painted on Saturday night and Sunday, and she and Grandma Lyn spent hours cleaning, but there's still a lot to do and Keri doesn't think it'll all get done tomorrow. So we may end up asking them to hold us until Tuesday, which they've said they'd do.
The ups: her bilirubin came back down to normal on Sunday, which was a big relief. It never got anywhere near the panic level, but it was outside the normal range and rising. Veno-occlusive disease usually happens earlier, but not always. Hopefully it will stay down tomorrow. Also, her red cells and platelets rose for the second day in a row. It looks like she's going to make it through this without having received a single red blood transfusion, which is amazing (thanks for all the blood, Mr. Donor!). She's received several platelet transfusions, but maybe she won't need any more of those either. Also, she drank about 24 ounces of milk throughout the day, which is far more liquid than she had on any other day. Everything is looking good for a Monday release, except...
The apartment isn't quite ready yet. Keri and her girlfriends painted on Saturday night and Sunday, and she and Grandma Lyn spent hours cleaning, but there's still a lot to do and Keri doesn't think it'll all get done tomorrow. So we may end up asking them to hold us until Tuesday, which they've said they'd do.
posted by Arne Olson @ 10:55 PM
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