Feeding Tube Awareness Week: The Details
In case you missed, it please check out Our Story to find out why The Littlest Apple has a g-tube.
Today I want to share some of the details about what it’s like to have a g-tube.
What it looks like
I debated whether I wanted to share this, but I know so many of our friends have been curious. The Littlest Apple is more than happy to show off his button to anyone who asks (and sometimes even when they don’t!). I think the button looks like an air valve on a beach ball or pool toy. It sticks out a little bit, but when he’s got on a shirt, you can’t even tell it’s there.
How does it work?
The button stays inflated with water. When it’s time to change the button, you use a syringe to take the water out, and the button slides right out. Here’s a little illustration I found in the manual that shows the balloon inflated inside the stomach…
How often does the button have to be changed?
Every 4-6 months. Our surgeon told us that we could leave it in until it falls out (I think the stomach acid eats away at the balloon over time…), but we wanted to be proactive about it. It would be just our luck to have it fall out in the middle of the grocery store or something. We just changed The Littlest Apple’s for the first time over the weekend, and it took less than 10 seconds. So easy! This is such a cake walk compared to the NG tube changes.
When do you use it?
We use ours only at night, hooked up to a continuous very slow feed (40ml per hour) via feeding pump (see photo below). There are some kids who use theirs during the daytime for bolus (gravity) feeds (which wouldn’t work in his case) or carry around a little pump in a backpack, but The Littlest Apple eats orally during the day.
Here’s our feeding pump, attached to an IV pole. Ours is a Kangaroo Joey. We keep it next to The Littlest Apple’s bed.
We feed the tubing from the IV bag up through his pajama pants (he has to wear long pants, or his legs would get all tangled in the tubing), taping it at the bottom of his leg and on his undies.
Can/does The Littlest Apple unhook himself from the pump?
No. And thankfully, he always remembers that he’s hooked up and doesn’t try to jump down out of bed. It can be a huge pain when he decides he needs to go potty again after he’s already been hooked up. Then we have to undo everything, untape him, and pause the pump, go potty, come back and do it all over again. That’s been happening way too frequently lately. And it feels kind of mean to say “No! You just went!” when we’re about to pump him full of fluids all night long!
How many hours do you use the pump at night?
About 9 or 9.5 hours. (The doctor wanted it to be 12 hours…before he found out that The Littlest Apple doesn’t sleep as much as other kids!) The Littlest Apple goes to bed at 8:30, and usually wakes up before 6. As much as I’d love to teach him to stay in his room until X o’ clock, we can’t really do that. Being pumped full of fluids all night means he REALLY has to to potty first thing in the morning! (and sometimes he has to go in the middle of the night).
What formula do you use?
During the day, The Littlest Apple drinks Boost 1.5 (and he still drinks that from a bottle….we’re picking our battles.)
At night, we experimented with using blenderized meals for about 6 weeks. I LOVE knowing exactly what is going in to his formula, and I fully intend to return to blenderized meals at some point. BUT, for the next 3 months we’re using the super high calorie Boost 1.5 (the same stuff he drinks during the day) for a “calorie blast” to see how much we can get his weight up during that time period.
Here’s the 500ml Bag filled with Boost…
And here’s the Littlest Apple pretending to be all tucked in and ready for bed (and clearly not happy about it: “Mommy, why haven’t we read stories yet? We didn’t sing Twinkle yet! Why are the lights still on?!”)
I’m hoping to squeeze in one more post for Feeding Tube Awareness week, so if you’ve got any questions, now’s the time to ask!