I Knew

I had some experience with feeding tubes before I got mine. The experience came from the kids I saw.

I used to work in a care home. It was for developmentally disabled children that were beyond their medical needs but still required substantial care. There was one boy who was difficult to feed. He was about 9. When he was born, his umbilical cord was wrapped  around his neck. The delivering doctor was also drunk. 

While I was at this care home, this little boy had surgery to put in a feeding tube. Going by the rules, this boy had to leave the home. He was moved up a level of care. He would have to go to a facility requiring nursing licensure.

A year or two later I was a social worker for developmentally disabled children. I was a service coordinator. These kids usually got more than one service. Parents were overwhelmed... if the child was still with them. It was common for disabled children to be placed in care homes and institutions. 

I had to check on a little girl who was 4. She had a twin sister who was in preschool during my visit. The disabled twin was at home. When I saw her, she looked like a toddler. She wasn't walking and was in a large baby carrier. The biggest medical issue was that she was tube-fed. The mother showed me how it was done. She was confident and well-taught. She had no issues in meeting her child's needs.

It has been unusual to see a child with a feeding tube at home. That has been slowly changing. People aren't as scared of the device anymore. The feeding tube is like an IV but the feeding tube carries a nutritious formula, usually. This formula goes to the stomach. There are no blood vessels involved in the feeding process.

Changes and care is provided by a trained professional. This might be a family member, but in my case and many others, it is a doctor.

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I opened my eyes in 2003. I had a terrible brain bleed in 2002. It wasn't a blockage but a bleed. It prevented blood and oxygen from getting to the brain. It was a bleeding stroke. Survival doesn't happen often, but I was lucky.

Nurses would put me in front of the TV. I'd watch Terri Schiavo on the news. They were debating removing her feeding tube. Her outcome would determine mine. I was pretty much in the same way.

I didn't talk or move. No one knew that I knew what was going on. I was on edge.

Later that year I said "NO" to a different surgery. I had a few more words in 2004 by the time of Stanford surgery, I left in 2006. I'd recover where I didn't have to worry.

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I somewhat knew of the feeding tube before I got one. I learned about them in school. I was exposed to others having one. It was not scary.

It's odd that I knew beforehand, but I don't know what to classify that as. Foresight?

I now learned a lot since getting my own.

"They ask me how I knew."