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That sucks that PT isn't more frequent or better scheduled also, maybe I'm off base, but if the only reason to stop the gavage method is the fear of him strangling on the feeding tube, is there not some way to fix that??? Like some kind of tight fitting outfit or jacket with a pocket for the tubing, and then keep the bottle fixed somewhere away from his upper extremities out of reach? It seems like surgery is just a bit extreme if there's any possible way to do it by mouth. Clearly I am not an expert but just trying to think out of the box here.
I hope he improves a lot in the next 4 weeks and doesn't need any invasive testing!!
Well, the gavage is connected to a tube through the nose so the tube is always present near his neck, no matter what you do. The tube needs to be long and free so we can control speed. That's part of Rowan's present difficulties with the gavage. It still takes an hour to get the food into him because you HAVE to do it very slooooooow. This is why I had to quit pumping while doing the gavage. He just screams, frets, and thrashes around so much that I have to hold him.
The cons to keeping the NG tube (meaning through the nose) is the choking hazard, irritation to the nostrils/nasal passage, congestion, and impaired swallowing (they feel something at the back of their throat and they don't like it).
I really don't want him to have surgery either but he may do better at sucking/swallowing with it out. *sigh*
'Scuse the bad typing, please. 'Breast is Best' but not when browsing the internet!