Christine
thank you. I am so sorry you endured so much difficulty .. I so can sense in your written the struggle you went through. I am grateful you can share back with us your support and caring words of help.

We don't have a feeding pump. not sure we can get one, but we meet with the nutritionist again tmw.
His dilemma is so multifaceted, volume, aversion, trismus, not having the taste for food, swallowing discomfort.

but.. yes. I believe we do need round the clock anti emetic Zofran and compazine' maybe that will help prevent the belching/burping/repeating up PEG formula..
viscious cycle.

the think is I KNOW and understand from all I have read here how important the caloric intake is... and so I am frustrated and so concerned because he doesn't seem to appreciate it as much. He seems to believe that as he knows he will lose weight and that is to be expected. He has never been a big eater.. but a grazer.. so volume and PEG feedings are a big challenge. He sees and hears my concern and sharing the critical importance of nutritional intake... but his stomach over-rides his mind.

as for oral intake.. dairy like things are too thick now and he gets overly mucousy. He will tolerate thin yogurt drinks but that is maybe one a day.

ice cream... a little. soup .. a little.

I keep telling him he will end up in the hospital ( and that may be a good thing really) but all he keeps telling me is he is trying ( and he is.. he really is)... so I am at a loss..
we even had a talk about focused priorities.. he says yes, understands, but the intake just doesn't happen.

thankfully, we are in a good place with pain management.
If only PEG feeding was in a better place.

I know he can't afford any more wt loss.

we will get on a round the clock anti-emetic regimen and not as needed.
mmaybe that will be the first step.
and maybe some yoo hoo.... it is thinner than regular chocolate milk.

thank you Christine. !!!!!!!!!!!