Thursday, February 11, 2016

Feeding Tube Awareness Week - Day 5 (How My Son Feels)

Today I decided that I would share my son's thoughts on his g/gj-tube. A little back story before I get started:

Our son is 10 years old and got his tube 16 months ago. He's your typical little boy. He loves all things Lego, anything to do with robots, Lego, reading Calvin and Hobbes, and did I mention Lego. He has a small thing for Lego. His favorite subject in school is handwriting and he is learning to play the drums.

He also has quite a few medical needs and special needs that prevent him from being able to eat enough calories to sustain his life. 16 months ago his doctors decided it was time to place a feeding tube in the form of a gastrostomy tube.
    A gastrostomy tube (also called a G-tube) is a tube inserted through the abdomen that delivers nutrition directly to the stomach. It's one of the ways doctors can make sure kids with trouble eating get the fluid and calories they need to grow. - Kids Health
    G-J tube is a single tube that passes through the abdominal surface, into the            stomach and down into the second part of the small intestine (the jejunum).  The tube stays in your child's stomach because there is a balloon inflated inside the  stomach to help “hold” it in place.

Below is my interview with him. I had a fun time doing this and I think I might chat with my kids more often for my blog. They seem to have a lot to say.

Our son started with a g-tube. After a while, and for no reason we can figure out, he stopped tolerating his feeds no matter how slow we went. We eventually moved him to a gj-tube. This has a longer tube that goes into the upper portion of the small intestine through the opening between the stomach and small intestine.
G-tube (Top left picture)

Mic-Key GJ-Tube

Now, back to our interview.

Q: Buddy, do you mind if I interview you for my blog for Feeding Tube Awareness Week?
A: Do I get paid? (incredible laughter by my son - you will learn he's quite funny).

Q: How did you feel the day your doctor said you would be getting a feeding tube? Do you remember how they showed us a doll with a tubie in her tummy and let you play with it and learn about it?
A: I was nervous because who wants a hole all the way to their stomach and then put a tube in it? I know I don't. But now I am used to it.

Q: How do you feel now that you have been living with a feeding tube for a while?
A: I just do what I can. I play sports (he's on a team for kids with differing levels of ability), irritate my brother (and with that the question was over because he couldn't stop laughing).

Q: Do you like your feeding tube?
A: Uh huh. It feeds me when I don't feel like eating or can't eat.

He stopped me at this point and said, "Mom, you are forgetting an important question I want to answer."

I asked what that was.

He said, "What did it feel like the first couple of days after I got my tube?"

Q: OK buddy, what DID it feel like the first couple of days after you got your tube?
A: I was kind of nervous and felt like I was going to throw up (we later figured out he was refluxing due to not tolerating his formula and, once we changed, he stopped that). But I didn't want to barf because I was afraid it would hurt.

I also felt important because everyone was sending me presents and flowers and the nurses were all doing things for me. It was fun. (leave it to a kid)

Q: What advice would you give one of your friends who was going to get a feeding tube?
A:  You get used to it.

Q: What is the best part of a feeding tube?
A: The J part of my GJ-Tube is cool. But it's kind of gross that it goes into my ... let's talk about something else. I can eat all the candy because Mom gives me nutritious stuff in my tube. KIDDING MOM!!! (more laughter)

Q: What is the worst part of a feeding tube?
A: Getting it changed. They stick something in the hole in your stomach. (if you can't tell, that just freaks him out when it's the center of attention)

Q: Is there anything else you want to say?
A: Yeah, you should do these more often. I have a lot of things to tell people.

So, there you have it from the horse's mouth. He really is just pretty cool with the whole thing. He hates changes, even when it was a simple G-Tube and we did it at home. Other than that, he's pretty relaxed about it and I think he forgets it's even there. It's just part of our daily lives that he's learned, over the last 16 months, to work with each day.


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