Products for Kids with New G-Tubes

I remember struggling with the idea of a G-tube. As a nurse, I knew the implications and what it entailed. I also knew my son would greatly benefit from the procedure. I mean, it can be as permanent or temporary as needed. But as a mother, I couldn’t wrap my head around taking the leap to do it.

At just one year of age, Liam was only weighing in at 15 pounds. He required high calorie formula but was not able to take in enough volume during the day to keep his weight up. We tried a less invasive option first. We did three months of trialing an NG-tube and I will be honest—it was awful! Every day was a constant battle. I had to reinsert the tube at least once a day if not more. Pulling out the NG-tube was his favorite thing to do. And as you could probably guess, his least favorite thing was replacing it.

Best Decision for Our Son

In October of 2016 when Liam was one and a half years old, we bit the bullet and had his surgery to insert the G-tube. It was one of the best decisions we have ever made for our son. Suddenly the stress of whether or not our son would take in enough to gain weight was gone!

• If Liam does not want to drink his bottle, we can put it through his G-tube.
• If Liam is sick and in need of hydration, we can put it through his G-tube and possibly avoid an ER visit.
• If Liam needs medicine, we can put it through his G-tube.
• If he has not met his minimum caloric goal to gain weight, we can add overnight feeds through the G-tube.
• The G-tube is convenient to feed Liam any place and any time.

Products to Help with the Transition

However, getting used to using a G-tube, doing the daily care involved with it, and initiating feeds, can be overwhelming at first. I have found a few items that definitely help make the transition process easier.

Smart Organizer

When we first started, I was very overwhelmed by the sheer amount of supplies that come with a G-tube and how best to store them for travel and everyday use. Then I stumbled across a store on Etsy that carried a smart organizer, which included many pockets for supplies such as spare syringes, extension tubing, and extra G-tubes. The organizer can be folded up and snapped shut to make travel easy. We carry it filled with Liam’s supplies in our diaper bag every day.

Belly Bands

The same store on Etsy also makes belly bands, which helped relieve one of my biggest fears when connecting Liam to his overnight feeds. I was convinced that I would wake up in the middle of the night to find Liam in a tangled mess and his G-tube dislodged. I don’t know about anyone else, but my little monster flops around like a fish at night. These belly bands are made to size for each child. They allow access to the G-tube as well as flaps to help secure the tubing along the band, in hopes of keeping your child from playing with the G-tube or pulling it out. In our experience, it works amazingly, and Liam hardly noticed the tubing sets when hooked up overnight.

G-tube Pads or Covers

G-tube pads or covers help keep the site clean and dry. My husband or I change Liam’s daily and have not had a single issue since starting to use them. Many of his doctors have commented about how great the G-tube site has healed and continues to remain clear of granulation tissue. These covers also can be ordered with cute designs on them to allow your children to help express their own personalities.

Tubie Friends

There are many other products I would love to share with you, but I’ll just share one more. This is by far my favorite. When we were in the hospital for Liam’s G-tube procedure, I remember expressing to the nurse how I wish we had something the grandmas and babysitters could practice on for things like flushing the G-tube or connecting the extension set. The nurse recommended we check out Tubie Friends.

Tubie Friends is a non-profit group that makes stuffed animals to match your child’s tubes. This helps the child feel more at ease with their tubes, the procedures they have had, and the changes that have occurred to their bodies. The tubes that can be included in each Tubie Friend include G-tubes, NG-tubes, GJ-tubes, J-tubes, trachs, ports in the chest, central lines, PICC lines, nasal cannulas, etc. We love this product for both children and adults. This can allow the child and caregivers, who may not be proficient in G-tube care, to practice care and ease their minds.

Although these products may not be preferred by everyone, we have found them to be helpful in our G-tube adapted lives.

• Nora Made Me: G-tube organizer, belly bands, tube pads
• Tubie Friends: stuffed animals with tubes
• FashionTubies: tube pads and belly bands
• Little Len Creations: tube pads and port covers

Additional product listings are available here.

Brittany Long is a mother to two children, Landon (4), and Liam (2), who has ATRX. She is also a wife and a NICU nurse who lives with her family in Northwest Indiana. You can follow Liam’s journey and find additional ATRX resources on Brittany’s blog: http://www.aspecialpieceofme.com