Charlie's appointment in the sleep clinic is December 14th. Then we are going to drive back the same night and do the sleep study. Check in time is 8:30. That ought to be fun with a child whose bedtime is 7:00. and it takes like an hour to get all the stuff put on her and get her settled in, so we're looking at 2 1/2 hours past her bedtime. Fun!
I'm so thankful to finally be understanding this autonomic stuff. I really SEE now how her body responds to stress. She had her first storm since she's been using the CPAP. Her nurse put the CPAP on in the early afternoon for a couple of hours (we do this because she has a tendency to storm in the afternoon and we are trying to prevent it), then put it on again when she saw Charlie was heading for a storm. It didn't stop it. But I didn't go "oh well hell, I guess this isn't our answer" and threw out the whole theory. I recognized she was stressed in another way. Insurance was giving us problems about covering her Prevacid (again) and she went without for about 4 doses. She was in pain. Pain that stressed her. Stress that sent her into a storm that the CPAP wasn't going to fix, since it wasn't her breathing that was the problem. After her dose of Prevacid, it took about 2 hours, but her HR went back to normal.
I feel like a freaking genius. LMAO
Anyway, wish us luck with her appointment. If nothing else, I hope her study shows that she needs the CPAP and we'll get to keep it. I'd like to keep playing with it to figure out what works for her. I'm also eager to talk with the doctor about long-term breathing support. I remember liking this doctor and thinking he really "got" these kids.
We pulled out the Car Seat Poncho and I'm happy to say she still has tons of room to grow, even after her 9 month long growth spurt. I love her face. She looks like she's saying "Seriously mom!?" LOL
I'm so thankful to finally be understanding this autonomic stuff. I really SEE now how her body responds to stress. She had her first storm since she's been using the CPAP. Her nurse put the CPAP on in the early afternoon for a couple of hours (we do this because she has a tendency to storm in the afternoon and we are trying to prevent it), then put it on again when she saw Charlie was heading for a storm. It didn't stop it. But I didn't go "oh well hell, I guess this isn't our answer" and threw out the whole theory. I recognized she was stressed in another way. Insurance was giving us problems about covering her Prevacid (again) and she went without for about 4 doses. She was in pain. Pain that stressed her. Stress that sent her into a storm that the CPAP wasn't going to fix, since it wasn't her breathing that was the problem. After her dose of Prevacid, it took about 2 hours, but her HR went back to normal.
I feel like a freaking genius. LMAO
Anyway, wish us luck with her appointment. If nothing else, I hope her study shows that she needs the CPAP and we'll get to keep it. I'd like to keep playing with it to figure out what works for her. I'm also eager to talk with the doctor about long-term breathing support. I remember liking this doctor and thinking he really "got" these kids.
We pulled out the Car Seat Poncho and I'm happy to say she still has tons of room to grow, even after her 9 month long growth spurt. I love her face. She looks like she's saying "Seriously mom!?" LOL
I found this pic in my phone. I forgot her nurse had sent this to me. This was from probably from 2 months ago. So pretty!
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