My dad started with Trilogy just at night and progressed to full-time use. For a while, he could go up to a few minutes at a time (during showers) without the mask, but now can't go more than 15 seconds or so without it.
He decided against invasive (tracheotomy) ventilation, but it's hard to...
I wanted to share some exciting news...
My dad had been using a Head Mouse until he could no longer move his head, about two months ago.
There are plenty of expensive options for "eye tracking" - but I found a $150 device on Amazon called Tobii Eye Tracker 4C. It's designed for gaming, but...
Thanks again for all your guidance.
Things have progressed over the past few weeks and he's unable to stand us removing the mask for more than 5 - 10 seconds. We take it off for cough assist, suction, washing out his mouth, etc. He's really not showing any signs of CO2 buildup as near as I can...
We have a pulse oximeter, which measures oxygen saturation, but I guess there's no easy way to measure CO2? How will we know if there is CO2 build up? Today he said he was short of breath, even though he was wearing the mask.
We also have a cough assist machine that he uses about 3 times a day (trying to avoid pneumonia, mucus plugs, etc.); I guess that would clear out any residual CO2?
Do you think our ALS clinic would prescribe morphine? Or is that something usually only done in hospice?
The more I think about...
Thank you so much for your insights. He is using S/T AVAPS mode in the trilogy. Do you know if that setting provides a backup rate? Where would I check for that? I thought it only assisted him whenever he initiated a breath. We had always assumed that one night he would just stop initiating...
My dad was diagnosed in May last year. Within 3 months he was in a wheelchair and 3 months after that his speech started to go. He is now in the end stage - no speech, no arms/legs, and unable to swallow. His FVC was 24% in January.
He had been using the trilogy mask at night, but over the last...