I imagine that the world of G tubes is as new to most of my readers as it was to me. Here are some FAQ's:
1. Let's start with fashion! How do you dress your child in a cute piece of clothing if she has a g-tube that needs access?
I definitely find that sleepers with the snaps are much easier for accommodating and allowing access to the g tube. I'm sad that she hasn't been able to wear anything with zippers on the front. Carters had snap front rompers for the summer, and I bought as many of these as I could!
Tummy Tunnels: these are good to put on onesies, but not sleepers. I ruined a perfectly nice sleeper because I put a tummy tunnel on it and created a hole for the g tube but then Evie just sat around with a nicely dressed hole in her clothes.
For a zippered sleeper, snip a hole on the seam in the crotch or down the leg. I'm guessing we won't be including these in our hand me downs! We did this with our Zipadee Zips and they work great!
2. How the heck can I go out with my baby if we need to be hooked to a G-tube every 5 hours for 90 minutes at a time?
When Evie was about 3 months old, I saw a woman in a hospital waiting room feeding her son by G-tube with a little lunch cooler next to her. I asked her about it, and she showed me the G-tube bag nestled in the cooler with an ice pack, and another pocket with the pump sitting inside. I was so excited to see this. IV poles don't exactly travel well. So I went to Target and bought my own lunch cooler. That was our first travel bag.
I also found a seller on Etsy who adapts kids' backpacks for g-tubes. I found a penguin backpack on her site and I was in love. Now Pepe the Penguin backpack goes where we go! Pepe gets equipped with a g-tube bag full of formula, and the tubing gets threaded through to the front pocket, which hooks up to the g-tube pump that regulates how much food she gets. An ice pack keeps the formula fresh.
3. How can I keep the G-tube from disconnecting from the extension tube?
We originally used the CORI box, which was invented here in Boston for a girl named Cori. But then the length of the catheters were changed, and now our box doesn't fit anymore. I hear that they are working on a new version.
There are also cloth versions on Etsy, but they don't do much except keep things from rubbing up and accidentally dislodging the connection. If any pulling happened, this wouldn't be very helpful. I learned that the hard way in the car.
My latest find came out of desperation when the length of the bag catheters got longer. That's when I found the AMT clamp, which is harder to put on, but definitely more secure than the others, and allows med port access at all times. Our medical supply company provides this for us.