Vince I'm sorry that each loss that is measured really is another slap in the face. We know it is going to happen, we feel and see it happening, they measure and confirm it, yet it's still a kind of shock and another grieving all over again.
I don't know a lot about bipap, but I believe the trilogy has many more options than regular bipap machines.
The RIG placement is normally used when breathing is a real issue and the patient cannot lay flat. However he is correct it's not 'better' as such. Some docs prefer to use RIG as a precaution with breathing, others will make the call on the results of current breathing tests.
If you have a peg placed now, you are truly doing yourself a favour. Your breathing is still pretty good, even if it has dropped.
If you get the peg placed before you really need it or before your breathing is really poor you have a much better chance of a good fast recovery from surgery and you can ensure you are getting heaps of calories and fluids as you decline.
My Chris always said yes he would accept a peg. However he kept saying not until he felt he needed it. So he was almost unable to eat, was emaciated and dehydrated and suddenly wanted all strings pulled to get it happening fast. He was lucky our speechie did pull strings and it happened fast. However he never adjusted well to it and he never put on any weight (indeed he continued to lose weight) because he still resisted using it and felt sick and tired all the time. This was because his body was already in starvation mode. PALS need to avoid hitting that point as it's terribly difficult to reverse even with a peg in place after the fact.
So as hard as it is to take them saying you need to get things going now, please understand that research shows early peg and bipap use will give you so much better quality of life as your nutrition and breathing are supported before you really take a dive in those areas.
IIWII and it sucks.