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.
Feeding Pump
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?!”)
Nighty night!
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!
Thank you so much for sharing this information. My little boy has multiple food allergies, and while we have never had a G tube suggested to us (he’s always been on the weight charts, although around the 10% mark), we do know of other kids with food allergies who have them. I really had only a vague idea about how it worked, looked, etc., so this has been really great to read your story.
Lynn,
Thanks so much for your comment! That is exactly why I wanted to share some of the details. I know we have friends and others who are curious about the details of my son’s g-tube (“button”). I just wanted to raise some awareness. Best of luck with your son’s allergies! It can be such a struggle to gain weight when there are multiple foods you have to avoid due to allergies.
What is the 1.5 boost?
I so admire you for handling all of his health issues with strength, grace, and a positive attitude. I can’t imagine all the extra effort that this involves, and you make it look easy! Hang in there! 🙂
Agnes,
Boost 1.5 is one of the high calorie, nutritionally complete pediatric formulas available without a prescription. It can be ordered directly from the manufacturer (Nestle Nutrition). Here is a link to Boost Kid Essentials 1.5: http://www.nestlenutritionstore.com/general-itemdetail.asp?T1=BKE15R+VANI+27CS
Hope that helps!
Tanya,
Thank you so much for your kind words! For the most part, this has just become our new “normal”, but every once in a while it’s just a big old pain to deal with! I can’t tell you how much your comment means to me. 🙂
I am so happy I found your blog today! My son also has a feeding tube. He was in the hospital with FTT, severe acid reflex and we we were told he had linear epidermal nevis syndrome. He was sent home with an N/J Tube. After 2 weeks of being in the ER every other day (becuase he was pulling it out) for placement, we finally got the G-tube and Nissen Fundoplacation. Thank you for your post about Feeding Tube Awareness week! =)
Tanya, you said exactly what I was thinking. I know the last few years have been a struggle, but you handle it so well. Finn is such a trooper and you guys are amazing!
Thank you for posting this. It answered a lot of questions I was too afraid or to be honest, too embarrassed to ask.
I just stumbled across this post I have a iniece that’s been on one for about a year and another neice for about 3. has your son graduated or does he still have his gtube?