Well, maybe not that glorious, but food all the same. Last night the doctor allowed “full diet,” but it was after food service closed for the night, so I had to wait until this morning to actually eat. Started with breakfast burrito and breakfast potatoes from room service. That wasn’t enough, and I didn’t want to wait an hour for another tray, so I went down to the cafeteria and added a couple of pieces of French Toast and a sausage patty. Probably didn’t need all that sugar, but just this once, I opted for calories and taste over blood sugar control (and I don’t have a big blood sugar problem, just some insulin resistance which isn’t out of control…so a lapse now and then won’t send me into a sugar coma).
Had to be careful, and had to wash down every swallow with water to keep food out of my wind pipe (and a little did go in, but I was able to cough it back out before it got deep enough to be a problem). I call it a success. Not quite as functional as I was before having the trach tube put in, but functional enough that I think I can go 100% real food immediately and get the NG tube out before I go home (if the ENT team agrees).
The other very good reason to do all real food is that the formula they use for NG feeding keeps me running to the bathroom…had this same thing happen when I was on the PEG tube feeding, and living that way for 5 months added 3.8 wrinkle lines per eye. Driving to work was always a gamble (which, fortunately, I never lost, but a couple of times I was probably one long light away from disaster). Then, what fixed it, was switching to eating normally. That problem 100% went away 1 day after switching to real food. So, no formula if I can help it.
My only concern on intake is maintaining hydration. What I do aspirate more than anything else is thin liquids…i.e. water. If I take a big gulp, 95% goes down the right way, but that remaining 5% going down the wrong way, while not hugely dangerous, as water is fairly neutral, does make me cough. And cough. And maybe then I’ll cough once or twice more. Really disincentivizes me to stay hydrated, even knowing that hydration is important to the extreme.
So, today I am practicing different swallow modalities to try to find the best way to get water to my stomach with a minimal getting to the cough button. So far, looks like looking down while I swallow is the winning position, but I’ll keep experimenting. This seems to keep my trachea closed enough so that the 5% goes into my mouth instead of down my trachea. Then, I can either take another drink and re-swallow, or spit (suction) it out of my mouth.
What really needs to happen is that the bon-bon needs to go away. As mentioned before, it is pressing everything back 1/2 inch or so, and interfering with both swallowing (preventing the full swallow) and aspirating (allowing the remaing swallow to go down the wrong way). I keep pressing on the ENT team to think of something other than radical neck dissection with complete trachea removal. I just can’t imagine that the bon-bon can’t be eliminated or at least reduced short of that.
Steroids and antibiotics will reduce the immediate inflammation, but I don’t see how that will reduce the overall tissue mass. The bon-bon is hyperplastic, meaning that it exhibits rapid cell division/growth. So, I’ve floated that perhaps treating it like a tumor, with fluorouricil, might be effective. Fluorouricil cause cell death upon cell division. The trick (if something like this would work) would be to find a way to anger the cells enough to trigger the high rate of cell division. Maybe a low-dose blast of radiation? Or, some physical trauma (stick it with a needle and drain it) or inject some other irritant (but dangerous, I’d expect). Anyway, they are the doctors, I’m the patient. Well, impatient at times.
But, in any case, not to detract from the good news…food, glorious food! (Ok, I’ve changed my mind…after nearly a week without really eating, it was at least a little glorious.)