What do you think of when I say “feeding tube”?

I can tell you what I thought when I first heard JB’s gastrointestinal (GI) doctor say he’d need a feeding tube:

  • I remembered one time when I was maybe 12 and I couldn’t eat because I was too anxious about something happening at school later that day. Someone told me, “You know what happens when people don’t eat? They get a tube up their nose and have to get their food that way. You don’t want that, do you?”
  • I pictured the images I had seen in the media of comatose people in hospitals, hooked up to tubes and beeping monitors. (The Terri Schiavo case was all over the headlines when I was in high school.)
  • I thought of the scene from Season 2 of Arrested Development when Buster Bluth says he’d be happy just being fed soup through a tube for the rest of his life. (My mind usually turns to at least one sitcom quote, even in crisis mode.)

I believe this is what actually came out of my mouth when JB’s doctor mentioned feeding tubes: “He’s going to be hooked up to a machine forever?! He won’t be able to go to school or have friends or be a kid!”

Thankfully, the GI doctor was a mother with young boys about JB’s age. She “got it” from a mom’s point of view, and for that I’ll be forever grateful. She had a nurse come in and together they explained how common feeding tubes actually are. “Tubies” – or people that use feeding tubes –  live fulfilling lives going to school, playing sports, making friends, having careers, and raising families. It is just a different way of eating, not a life sentence.

The nurse and doctor then showed me a feeding tube button like the one JB would have. I’m going to attempt to explain it the best way I know how, but I urge you to learn more here to see for yourself. The G-tube button looks like a combination of a post earring and the air vent you use to blow up an inflatable beach ball. The button is surgically inserted into the stomach – basically like piercing an ear, but in his stomach, and a wider “post”. It stays in thanks to the “backing” – a plastic bubble you inflate with a few milliliters of water. If the button comes out, you simply reinsert it and reinflate the bubble. If the button comes out and isn’t reinserted within an hour or two, the “piercing” closes up.

There are several kinds of feeding tubes, and each is named according to where it enters the body and/or delivers food. JB originally had a G-tube. (G is for Gastric, as it goes directly to the stomach.) He has had an NG tube (Nasal Gastric, as it enters the nose and goes down to the stomach) before during hospital stays, as those are usually temporary, and don’t require surgery to place them. He now has a GJ tube (Gastro Jejunal, as it has a port into the stomach and a port into the “jejunum” part of the small intestine.) Here is an excellent explanation where you can see examples of these feeding tubes and other kinds. No matter what the tube button, you use an extension tube to insert the food into the body, whether by syringe, gravity or pump. Here are some of the most common feeding methods through the extension.

So what goes into these tubes? Well, it depends on each person’s nutritional needs and lifestyle. Breastmilk, traditional infant formula, specialized formula for all ages, or blended and pureed foods are all options for tube-fed diets. Often times medicine and water are also given through the feeding tube.

I encourage everyone to take some time this week – Feeding Tube Awareness Week – to learn a bit more about feeding tubes. There are so many awesome resources out there to de-stigmatize them.

Finally, if you learn nothing else from this article, please remember this: Never, ever base medical knowledge on Tony Hale characters. No offense, but Buster and Forky are not licensed medical professionals.

(Photo taken by my husband!) 

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