Thank you, Christine!

Both my ENT surgeon and the SLP think that since I can swallow small amounts I should have gotten rid of the PEG tube and Jevity 3 or 4 months ago. In fact my SLP basically says she doesn't want to work with me until I am making significant progress on eating. However my tongue is so swollen that each small amount of food requires 4 to 6 swallows, my throat is so swollen that my epiglottis won't move (zero retroflexion), I often cough from getting liquids at the top of my airway, and many foods cause a sense of revulsion. Most food that I swallow goes into the space under my tongue (valicula?) and I have to suck it up and swallow again.

I remember the word "bolus" from the hospital and not really understanding it. I also remember that when I first got the PEG tube in the ICU that they set up what seemed like a continuous feed, and that after several hours I told them I thought I was getting too much food, and too quickly. That is the only time I ever felt bloated. I have never felt nauseous. I've read about gravity feed through an open syringe or bag, but not tried it. The bags I get now won't gravity feed, they seem to require the pump.

When I have to get somewhere quickly, like an early appointment, I do what I call a syringe feeding: 2 and 1/3rd cans, by syringe with plunger, sometimes in less than 20 minutes. So that's somewhere less than two minutes for a 60 ml syringe. And having to use the bathroom soon after suggests that the rate is too fast to digest fully.

The nurse practitioner in radiology read notes that basically said that eating was so laborious for me that they thought I'd need the tube for another 4 to 6 months. When we go out to dinner, everybody has finished about the time I've gotten 10 or 15 bites.

Although I rarely finish normal food, I can be counted on to finish a Pepperidge Farm Milano cookie in less than 5 minutes!

best wishes, Jon