Welcome to Healing Well! You obviously are a difficult medical case and require top doctors to work this out and help you. I suspect you've got plenty of doctors working on your case, but I'm wondering if you could get one of long-term doctors to help you locate the very best practitioner available to figure out what's going on and how to get you healthier.
I feel your pain. It's a really tough problem you're faced with, since your swallowing issues limit the options that you have for treatment. You'are taking a PPI (proton pump inhibitor) for reflux, but you didn't say the dosage or when you're taking it. Those meds can be taken twice a day...before surgery I took 40mg before breakfast and 40mg before dinner. If you're refluxing at night, the before dinner dose would be very important. Also, if you're still getting breakthrough reflux at night, you could take 300mg Ranitidine (Zantac). Discuss these possibilities with your doctor. If your lungs are involved it's even more important to get the reflux /acid under control.
Here is a very helpful document that explains the importance of taking PPIs correctly to ensure that you're getting the most benefit from them.
You mentioned that you're sleeping on a wedge. I have slept on a wedge, and I can assure you that raising the head of your bed is more effective in keeping the contents of your stomach where they belong. Put blocks, wood, and/or bed risers under the legs at the head of your bed to raise it 7-8 inches. You'll find it more comfortable and if you slide down you won't be putting pressure on your stomach the way you might with a wedge. On very bad nights you can use the elevated bed AND the wedge for even more protection. The wedge is always good to take with you when you travel and are forced to sleep in a flat bed.
The small bites and chew, chew, chew are critical with swallowing issues. If you follow that great advice and also eat more slowly, you'll have a better chance of getting your food into your stomach, where it belongs.
Glad you've joined us!
Wish I could help more...
Nissen Fundoplication 2/09
Allergy/Asthma"Whatever you fight, you strengthen, and what you resist, persists.”
“Worry pretends to be necessary but serves no useful purpose”
“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.”Eckhart Tolle