G-tube Feeding

When a kid aspirates to the point that Parker does, they put a hole in their belly, a button in the hole, and teach you how to put their food directly in their stomachs.  Other wise known as g-tube feeding.

It’s not as bad as it sounds.  I know I’m kinda weird, but I’m thankful for stuff like this that allows me to feed Parker while keeping him safe from lung aspirations that make his Pulmonary Hypertension that much worse.

And I can get stuff in him that NO kid would willing eat by mouth.

It’s all about the silver linings, folks.

Parker being tube fed.

I can switch up his diet adding things like raw, organic beets, fish oil, millet, and grass fed locally sourced organic beef.  Each day this Hero of ours also gets goat milk and goat milk yogurt.  I’ve got to go back to making my own kefir though.  The cost of goat milk is really hurting the grocery budget, as this kid can go through almost $12.00 a week of it easily.

Because Parker and I love our friend, Chris, we choose to use pasteurized goat milk from a local goat farm (ranch?) that even recommends their milk be used pasteurized.

It is expensive to do a blenderized g-tube formula the way we do it.  Then again, we’ve seen his weight and health increase because of it.

Parker getting a bolus feed.

I’ll admit all of the organic and raw and the goat milk can make a little guy a wee bit gassy….usually at the most inconvenient times.  Then again my typical boys aren’t all that fun to be around after a bean burrito feast either.

I’ve written more about blenderized diets and g-tube feedings here and here .  Have any questions?

What to share a tip or a story of how somebody stopped and stared at you and shaking their heads and making comments about how stuff like that should really be done in private the entire time you were giving him a tube bolus?  (sigh)

My tip?  Always give a bolus on something easily washable.  Just sayin’.

Well, that’s what the comment section is for !

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. Here’s a tip. When you go out to a restaurant, a food court, a picnic in the park or even a hospital cafeteria, bring a sign to put on the back of their chair saying, ” I’m not neglected; I’m tube fed!”

  2. I’m going to play devil’s advocate here. Tube feeding is gross, but we as parents have been conditioned to some pretty gross things (tubes, trachs, etc.) so it doesn’t bother us any more. It DOES usually bother the average person who has never had the exposure to a decided that goes directly into the child’s stomach. Angela was tube fed from age 11 months – 4 years. Just as I was discreet with breast feeding, (I’m not a boob flasher, and this was the 90’s after all! LOL) I was also discreet with tube feeds. There was no need to lay my kid out and do a feeding. I could hook up her tubing without having to lift up her shirt (and without interrupting the conversation I was having) I didn’t NEED to lift up her shirt, so I didn’t. Then I’d suck up a bolus of formula, and feed her, all without anyone even knowing what was going on. Not everyone’s stomachs have been conditioned to see someone being tube fed, or to deal with “medical stuff”. I didn’t realize how stomach turning it was for some people until one day my friend’s 3 year old was at my house when I went to feed Angela. It was the first time I ever saw such a young child SHUDDER and cringe like it gave him the willies. That’s when I realized most adults probably are equally grossed out. In restaurants I would do everything pretty much under the table. Out and about I didn’t even get her out of the stroller. She’d just sit there while I fed her. Even at the park I’d call her over for a “snack”, and hook her up while she stood there with me. I wasn’t ashamed of it, I was just finding the happy medium.

    • Lesspring,

      I get what you are saying. Truly. The first sight of Parker’s ostomy bag set me back for a second WAY more than the g-tube did. A piece of his bowel sticking out of his stomach made me really worried about how I was going to keep it healthy.

      I didn’t even clean out Parker’s ostomy bag in the public restrooms because those changing tables were gross, and I felt his ostomy bag was a very private thing. Well, there may have been one time with my Mom, but nobody else was in there and the changing table was covered in paper…..it was desperate times.

      The time I referred to in this post was different.

      We had Parker in the stroller, we were back away from people, and an older couple looked over and then walked over to see what we were doing. First the lady shook her head, then made the comment that this should be done in private or in the bathroom or something. At first I wanted to say something very snarky, instead I asked her if she ate HER lunch in the bathroom.

      I didn’t lift his shirt up, the syringe was pretty much concealed by my hand and Parker’s body and my daughter was standing in front of Parker the entire time…..this lady came up to US.

      You know there are things I’d rather people do in private as well, like sticking their tongues down each other’s throats, hucking a lugie, picking their noses…….but I really don’t see anything that gross with me holding a syringe up in front of my kid’s stomach to feed him…..especially when we had found as private a spot as possible.

      I do understand what you are tying to say, but I also wonder if people shudder at something like a tube feed, then what do they do when they look at Parker’s trach or the obvious signs of his Ds? And that makes me kinda sad.

      Then there was the time when Reed and I were bolus feeding Parker and people kept walking by and staring and a few even SNICKERED…… and I was all….HOW RUDE…..we’re in a hospital where kids have all kinds of stuff hooked up to them.

      It was until a few minutes later that Reed’s foot started feeling wet and we realized that we were feeding his SHOE instead of Parker and THAT is why people kept walking by and staring and snickering. heh.

      • People are so obnoxious!!! When Axel was in his halo, we’d be walking though the mall or something and I’d see their eyes go to them. As soon as we got past them I’d turn around and they’d be staring and pointing. So I made him a shirt that said on the BACK “Stop STARING!!!!”

      • I’m just not getting why people think its gross? A lot of people who have no table manners whatsoever eat out in public and personally, I find that gross!!! People with g-tubes should be treated as any other person. All they are doing is eating!!!
        I have a little girl in my class that is g-tube fed. Her nurse comes into the classroom and feeds her wherever she may be at the moment. She could be playing, at circle, or in the gym getting OT or PT. her nurse hooks up her Mickey & feeds her. None of the staff notices really, and frankly none of her classmates notice either.
        Guess some people are just ignorant!

  3. Becky Roe says:

    I wish I could tube feed my 7 yr old. He is all skin and bones :) I have been reading here for years and I remember you celebrating Parker getting to 20lbs. You have been doing great work feeding that beautiful boy!

  4. Chris says:

    I love the story about feeding Reed’s shoe, hehehe!
    Thanks so much for the pasteurized milk reassurance! People with IBD often do have difficulty digesting dairy of any type because the digestive enzymes get sloughed off by the inflammation. That may or may not change with time.
    I think there are many things that scare people who haven’t seen them before, tube feedings being one of those things. I do generally think the negative responses are fear based, but wouldn’t it be great if everyone could keep their negativity to themselves? I guess I’m a dreamer!

  5. Hello I have a son w a gtube/jtube can u plz tell me what foods I can put in his tube

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