Abi has had a g-tube for 3 years now. While we are making great progress in feeding therapy, the tube is still how we get most of our calories, meds, and hydration. My friends in similar situations always laugh that people seem the “most concerned” about their kids’ feeding tube- when the g-tube is actually the easiest thing about our day.
For the sake of this post, I’m speaking about the gastrostomy tube (g-tube), a tube inserted through the abdomen that allows you to send nutrition directly to the stomach. While the NG tube serves its purpose and is miraculous and fairly simple for what you’re actually doing (feeding someone through a tube that goes through the nose, down the esophagus, and into the stomach) it’s not an experience I wish to relive. The g-tube, however, rocks my world.
- It’s portable. Super easy to clean, super easy to take, super easy to pack. Even if you’re using a pump, you can take it with you in a backpack or be creative and set it up in different ways. For example, whenever we used to go to our friends’ house we would sit on their couch and hang the bag on the window sill behind us. Efficiency friends- that’s the name of the game.
- It doesn’t require a PhD to use it. A pump can become second nature once you get used to it, and bolus feeds without the pump (like we do) are crazy simple. I could teach any caregiver (or really responsible teenager) how to use it fairly quickly.
- You can “vent” your child. This is a massive unexpected perk. Gas pains? Hiccups? We can hook up the tube, lay it sideways and air will come out. This is NOT like gas because it hasn’t gotten to the bowels. It’s just air that is causing discomfort to get out quickly and easily.
- It helps keep your child hydrated and medicated– This is especially useful when they’re sick or having trouble swallowing. No more wondering if those meds actually went down.
- It can make road trips a breeze. We don’t even have to pull over to feed Abi. We lift her shirt, plug in the tube, and never undo a single buckle on her car seat. She can get a good meal while we keep driving down the road.
- Your child is getting 100% of the nutrition you want them to receive. Some doctors say that kids who are on feeding tubes are getting the best nutrition in the world. And while I don’t like the idea of being on “medical formula” all the time, the g-tube still offers ways to put “real food” in the tube. This is a fairly new movement called the “Homemade Blended Diet.” There are also really cool small businesses who are now making organic “real food liquid blends” to use in tubes…
- You can change the button at home. Surgery is a one-time deal, but after that the button needs to be replaced every 3-6 months (depending on what your doctor says.) This is a simple procedure that takes about 5 minutes (or less). I used to really worry about the button coming out unexpectedly (it only has 3 times), but now that I’ve learned how to change the button myself- it’s no big deal. If the button comes out- oh well, I’ve got another one.
- It gives us freedom to teach her how to eat and drink safely at a comfortable pace, without the concern of her not receiving enough nutrients. Feeding therapy has been fun and exciting and now Abi sees eating as a fun and exciting! The g-tube gave us the chance to take our time with feeding therapy and turn what was once a very stressful situation into a positive one. Had we not had it, eating would have been a struggle every single day- only increasing her anxiety about it I’m sure.
- When we no longer need the g-tube, we can take it out and her stomach will heal. One thing the doctors told me at the beginning was, “This is not a done deal. If she doesn’t need it one day, we take it out, her stomach heals, and voila.” I have been excited to see kids leave the clinic for the last time after the g-tube was removed. And at the same time, if it needs to stay in forever- that’s alright too! This amazing life-giving intervention is truly phenomenal.
- It saves lives. The end.