My daughter is 12 years old and first started on her Bipap 'Nippy +' machine in 2011 due to sleep apneas and high CO2 which are caused from an inoperable brain tumour in her brain stem.
Last Friday the hospital changed her machine to the ResMed Stellar 100 with a H4i humidifier. It looked great , way smaller and lighter which we liked for her bedroom and for travelling, however.... its is way too strong and powerful for her.
Her settings are on 20 IPAP / 8 EPAP the same as her Nippy. But her Nippy was more like a gentle breeze and was a normal sort of breath in breath out. The new stellar is more like a hurricane and doesn't seem to have a nice breathing pattern. The first 3 nights she hardly slept as found it really hard breath. Then on Monday and Tuesday night her tummy was so bloated It looked like she was going to pop and was full of wind and in agony with tummy pain.
I have picked up her old Nippy machine and she slept back on that last night and we have an appointment tomorrow to meet with her consultant .
My question before I go is why is it so different. The Consultant and her team just keep telling me its the same settings so will be the same but I have tried it and I don't know how she even managed 5 nights. It really is just how she explained it a gentle breeze on the Nippy and a hurricane on the Stellar 100. Does anyone on her have any experience as to what is wrong and why it is soon different for her. My daughter puts up with so much her brain tumour causes and she doesn't need this on top of everything else , especially when the hospital don't seem to understand how different it is.
Thank you for any advice