Hi Tillie/all. The problem with the Trilogy is anxiety I believe. Dave has always been a bit high strung/anxious, and now that he is physically disabled he has no physical outlets to burn off the anxiety (working out, brisks walks, mowing uphill, LOL!!), plus he has always been a very light sleeper. I think that the very large, high profile design of the full face mask was quite intimidating to him. Like many PALS, this whole thing is a big as@ freak-out for him! He was so fit and strong and competant, and now he is relying on a machine to help him to breath. I can't really comprehend how that must feel .........
At this moment, he is asleep with the Trilogy on (yeah!!). I asked him to wear it while we watched some t.v., and he has had some wine and earlier a Xanax!! We won't give up easily, and I have tried to make him understand the Trilogy is his friend and his best chance for a longer survival. I have asked him to name "her" and understand that this machine is not an enemy.
Although the Trilogy is unlocked, I will not mess with the settings that his RT has set. She is a real gem - I trust her completely. She will show me some adjustments I can make down the road, but for right now, lets just say that these adjustments are best left to a respiratory therapist/professional. The Trilogy is more sophisticated than many people realize, and there are several circuits & interfaces (masks/nasal pillows) that can be used depending upon what works best for the patient. I stumbled upon a "Trilogy workshop" web-page on-line and it is quite revealing in exactly how complex yet versatile the Trilogy can be, depending upon "plumbing" / circuits, interfaces, etc. Our RT will show me down the road how I can adjust some settings, and I am comfortable with that. I feel that we have a real rapport with this RT, and for now at least, we will not change her settings.
Also, at least in PA, the neurologist sets the parameters he wants the RT to use. Dave's prescription from the neuro was for "assist/control or pressure control". The RT explained that she used a "Avap-PC mode" because it is more sensitive to the patient. She also told me that AVAPS automatically adapts pressure support to patient needs to guarantee an average tidal volume.
Dave is also a bit claustrophobic, and the full face mask did NOT work for him. Right now he is using an Airfit P10 nasal interface. Another one that was considered was the Nuance Pro, although I think our next step would be the one of the "hybrid" style masks. He has not used the chin strap yet, as I think a slow introduction & as low of a profile interface as possible is good for right now, although I know the chin strap will improve the O2 level entering his system and also decrease dry mouth. One step at a time .....
I went out and bought some Xylomelt discs and some pocket spray moisturizer that also has Xylitol as the major ingredient.
Thank you all for your input and support. I am so glad we can share and help each other here!