sixthkid,
In case you had not seen this article, I hope that it might be helpful --
A Closer Look: Diaphragm Pacing System | MDA/ALS Newsmagazine
I understand that the patient in that article was told that his breathing was getting poor, so get the feeding tube asap... and that's when he and his wife researched and found the DPS trial.
God bless you and your family.
r