JT

After failing four MBS (modified barium swallowing tests) aka fluoroscopic swallow tests, I knew that I had a bad case of silent aspiration. Rather than sip liquids throughout the day, I rinse, gargle and spit so nothing goes down my lungs.
Lately, for lots of reasons, probably including the cancer coming back, my mucous and phlegm discharges had increased so much that I was getting up every half hour at night to rinse and spit it out . Your description [quote]at night, I end up laying there listening to these horrible percolating and gurgling sounds until I do. Scary stuff![/quote is right on the money of what was driving me wild. In desperation I asked my ENT what I could do and she prescribed Robinul aka glycopyrrolate. It's a miracle drug in that it basically reduces the mucous and phlegm dramatically. Now I can sleep for three hours before the gurgling wakes me up.
I'm curious if you have been using formula the entire 7 years. I use a combination of formula and blenderized diet (real food- the same dinner my wife cooks, but thrown into a Vitamix) which has helped stabilize my weight.
So far in over three years, no pneumonia but then it is so hard to resist the temptation to sip anything since I know it all goes straight to my lungs. It helps a lot that I can put wine down my feeding tube
Keep the Faith
Charm