Following her May hospitalization for bowel issues, we set up a plan of action with the Motility Specialist. We have exhausted the natural options and are finally admitting that what works for a typical body is not sufficient for a low tone one. It will probably be a long trial and error road, but it is a relief to have some options that will hopefully make Aimee's life less uncomfortable and ours less messy!
I talked with the Sleep Pulmonologist who said that the night of Aimee's sleep study she had no desats. She stayed above 92%. She did need an increase on her bipap machine pressures. This was frustrating. I went with my instincts and asked to be set up with an oximeter at home to measure oxygen during her sleep. The doctor agreed, though based off of that one night, she wasn't concerned. Homecare set us up on Wednesday last week and we have had plenty of recorded desats in the 50-70% range while on Bipap. Too many. Even one episode where she satted down to 25% as I rubbed her chest. The beeping and running back and forth across the house through the night does get a little old, but it is terrifying to think this could be happening more than we know. Thankfully we have record now and the doctor can review what happens over a several night span rather than the one sleep study. I will feel much more confident in the decision that she makes based off of this information.
No comments:
Post a Comment
We love to read your comments and encouragements! Messages to Aimee are always welcome too. I will definitely read them to her. :)
Please be aware that I do moderate comments, so it will not appear immediately. If you have any trouble commenting, feel free to email us your thoughts to edr2005@gmail.com.