Monday, August 7, 2017

Tube Out, Then What?

In Dec 2016 and Jan 2017, the govt cut off my food until I had a swallow study done. There was probably no thinking at all. It would have been done as a paperwork issue. In reality, it was reminiscent of Terri Schiavo days. How long can she go without food?

Fortunately, my daughter had been stock-piling food in case we had a Zombie Apocalypse. Who knew the govt was going to be a zombie?

I had made some YouTube videos where I was speaking. If you look though, I do not speak a majority of the time. Maybe this got them thinking that I was back as I used to be.

Well, I didn't swallow for that test. It recently hit me that this was a good thing. What would they have done if I had swallowed? Would they have just cut my food off altogether and just left this tube in my stomach?

I am assuming that the tube just can't be left. As it is now, I have to see the GI Specialist every 6 months or sooner to have the tube replaced. It is held in place by a balloon filled with saline that can burst. It has. This is why I say sooner.

The tube can be taken out, but surgery has to close the hole. I just can't be left with a hole in my stomach.

When I did early intervention, there was a boy about 3 years old who still used a bottle to get his nutrition he was developmentally delayed. (I remembered the foster mother being told to use lollipops. This is where I get lollipops from.)

Years earlier while doing my MA, I worked in a group home for developmentally disabled children. There was a boy, around 15, who was learning to scoop and eat his own breakfast cereal. He could have easily been that 3-year-old boy. There's quite a few years from age 3 to age 15. I don't think eating comes so fast after swallowing.

I don't think my feeding tube can be instantly stopped. The plan of action should go something like the following and it can take years if need be:

1. Establish The Swallow (I do periodically swallow throughout the day, but it is not controlled.)
2. Slowly Switch To Drinking the Formula (A flavored formula is used.)
3. Remove the G-tube

It's been some years, but I attended only one feeding clinic session at a hospital as a social worker. I do remember something like this required coordination between professional, medical, and daily programming staff. A single entity could not make the decision.

I don't need any zombies. This can be a planned, coordinated thing.

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