Monday evening

Emma Kate had a decent night, up a little and asleep a little. Sounds like she was awake and ready to go around 5am, had a few bites at breakfast, and was very active with us for a while- walking around the room with us, playing on the floor in her pop-up tent toy, and watching the helicopters come and go. She went to sleep around 11:30 this morning, and now at 8:15, she is still asleep. We're going to test to see how long she will go without us trying to get her riled up- I've finally had a little time to do some research on methadone, and it scares me to think how much Emma Kate is getting. We're worried that some of the signs we're seeing (ataxia, lack of hand-eye coordination, small pupils, and sleepiness) may be signs that she's on too much. We've got to talk with the attending doctor in the morning and also consult with the pharmacologist about it and see if we might be able to taper the drug more aggressively to get her down to a more reasonable level. There are different ways of looking at it, but we're sort of thinking like one of the PICU doctors did when we were reducing her fentanyl and versed- instead of being really conservative and doing it really slowly, putting more drugs in her body, and prolonging things, his view was to get her off the drips more rapidly and let her "declare herself" as needing them back. Either way it's a bit scary, but I hate the thought of her being on these huge doses (10mg of methadone and 9mg of ativan both 4 times a day!) if they are not necessarily needed. Just need to talk to a few people and figure out if we can do better for her. So.... not much to report for today, since she's been asleep for most of it!