Sorry to say, the questions never end...
I have an 11 year old daughter who was diagnosed with Central Sleep Apnea, OSA, Periodic Breathing, Paradoxil respritory effort and asthma at age 5. We have been on bi-pap with a back-up rate for a bit over 5 years now. She also has autism, mild CP and dyphasia requiring a g-tube. Awake the girl is a riot and not only does she enjoy life she breaths just fine!
The need for sup O2 has vanashid (except when she is ill) but now we are struggling with ETCO2 levels of 50+ with bi-pap pressures of 14/8 and we also tried 16/10 with a back up rate of 12.
I am wondering what is next?. What is the limit of possitive airway pressure? What are the long term effects of PAP?
We asked about diaphretic pacing but that is negative pressure and we were told she would need a trach for them to even consider it due to the already compromised upper airway. That is what I am trying to AVOID!
Any suggestions .. ?

