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Special Needs Sunday: G-tube issues

06 Jul

When we brought Jenna home from the hospital, our pediatric surgeons strongly recommended a surgery to place a “button” for gastronomy feedings. We resisted, naively believing that her feeding issues would resolve in a few months and that we could manage nasogastric (NG) feedings (a tube inserted in the nose that goes to the stomach) until then, avoiding the need for surgery. It wasn’t long until we realized that NG feedings were very hard to manage with a wiggly infant. Placing the tube took two of us and was a horrible and tension filled ordeal; the tube had to be taped to her face, which resulted in raw, broken skin; she would pull the tube out (accidentally or purposefully), which meant starting all over again and created huge issues when there was no one there to help me; she eventually started gagging up the tube, so that even after it was placed correctly, she would essentially cough it up so it was going in her nose, but coming out her mouth – not good. So, we decided to have the surgery for g-tube placement and decided to use a low-profile, Mic-Key gastronomy tube from Kimberly Clark. Here’s a link for a video that shows how the button sits so close to the skin that you can barely see it under clothes, and how it works.

The surgery went fine. We were thrilled with how much easier g-tube feedings were than the NG tube we had been using and wished we would have had the surgery earlier. The button and tube have never seemed to bother Jenna. She calls it her “special button” and proudly shows it off if someone asks. Here are some things we have learned:

  • ALWAYS have an extra button. They DO wear out, start leaking, or get pulled out sometimes.
  • Teach caregivers how to replace the button if it pulls out. It’s very easy to do, and time is critical, since the hole can close within an hour.
  • It’s great to be able to give medicine through the g-tube! Make sure to ask your doctor for liquid forms of meds that can be given this way.
  • You CAN use zip-up pajamas even if you’re feeding overnight – – you just need to cut a small slit for the feeding tube to come out. Most kids pj materials (fleece and cotton) don’t rip or fray further than the cut, before the child grows out of them anyway. We struggled for a long time with snap pajamas, thinking they were our only choice.
  • Keep the site clean. Baths do the best job, but wiping every morning with a wet wipe helps too.
  • When redness appears around the button, we’ve found that calendula cream works best for healing. We get ours from California Baby.
  • Watch out for waistbands that hit right at the site when they sit down, and minimize dressing them in clothes that do this. Jeans seem to be the worst culprit. The stiff denim can irritate when it rubs the site while sitting. We tend to do a lot of dressing in overalls, dresses and knit pants.

Here’s a great site with answers to frequently asked questions about g-tube home care.

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2 responses to “Special Needs Sunday: G-tube issues

  1. Anjeanette

    May 11, 2009 at 3:31 am

    We are getting a g tube in the morning for our 3 year old. Thanks for putting this out there for us to find. I’m bookmarking your site for sure!

     

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