Peyton finished her sleep study early this morning. The official "wake up" time was 5:48 am, although I think I personally only slept for about 15 minutes all night. As expected, the process of hooking Peyton up to all the leads was like torture for her. Instead of starting her out in a crib and trying to get her to sleep there, they started out with her in a bed with me (that proved to be easier last time). She did fall asleep eventually, but it was restless for her. She would only sleep curled up with me with her head resting on my arm. Any time I shifted, she would cry. I was practically falling out of the bed, but she was "comfortable". I could barely feel my arm this morning! Peyton is normally on oxygen at night but I was told if the central apnea was severe enough, they'd put her on a BiPAP machine. At some point during the night, they did have to do that. She SREAMED like I've never heard before. It was absolutely awful. She would also kick and throw her arms every time she screamed. Every so often, about every 30 seconds she'd do this. Then it was just an angry cry, then a cry, then a moan, then it was just the legs/arms kicking. I thought she was finally getting used to it, but after about an hour the nurse came in and took the mask off and put a different on one. She hadn't been sleeping that whole time and they needed to find a better mask for her. She seemed to tolerate it a bit better from the start, so that was better for her. But her sleep was horrible after that. Very restless.
I am assuming since she was put on BiPAP that she will have to be on BiPAP at home now. They do not tell you any results at all as it is like going for any test - you never get the results right then and there. I was told to schedule the follow up visit for within two weeks. When I called this afternoon to set that up, the lady told me the doctor who heads up the sleep center wanted Peyton in Wednesday - two days from now. SO - I can gather from that that her central (neurological) apnea has worsened and that she'll likely wind up on BiPAP at home. Of course, they can't tell you anything over the phone. I'm pretty good at assuming medical stuff sometimes, though! :) After her first study, done May 19th, her follow up was actually not until July 23rd. However, her pediatrician received the study report and put her on oxygen on June 21st before "officially" getting the report from the sleep center. So, that right there tells me that this time around it's more urgent to get in to see the doctor at the sleep center.
I just called the pediatrician's office to let them know what's going on so they can be looking for the report to come through. It will also help us to be able to get a pulse ox monitor for home that is permanent, unlike the one we currently rent.
Poor Peyton looked pretty beat up once I got her home, but she was in good spirits. I came home, got her bathed and ready for the day and sent her off with Ron and Moira to be dropped off at the babysitter's. I went back to bed. Not for long enough, but it sure was nice to sleep!! I'll go to the chiropractor at 5:30 and then pick up Peyton. Hopefully I'll get to bed early tonight as I'm still fairly exhausted!
I'll update the site once we have the report on Wednesday.
No comments:
Post a Comment
We welcome your comments and especially your prayers and support as our family journeys through the ups and downs of life with a special needs and medically fragile child. Thank you for visiting!