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Old 12-08-2008, 06:07 PM   #1
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G-Tube Feeding

My daughter recently had a fundoplication (sp?) and a g-tube inserted, about 2 weeks ago. We spent about a week in the hospital, and have been home for about a week. This is all new to us, we have never met anyone with my daughter's needs, and it is very frustrating. The care of the tube is relatively simple, but the complications that come with having the tube are hard. How do you keep a 5 year old from jumping and climbing? She still has the external tube until mid january, then they will evaluate her for the flush to the skin one. Any other mama's here going through something similar?
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Old 12-08-2008, 09:01 PM   #2
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Re: G-Tube Feeding

Yes and no. My child can't walk but has been tube fed his entire life (he is currently 4.5 years old) first by TPN (IV feeds) and then by TEN (g-tube feeds). Is she able to tolerate boluses or is she on continuous feed (where she is hooked up to the feeding pump most of the day)? Boluses are better for a mobile child if she can handle it but if not then you need a small battery powered pump like the Zevex Infinity, Zevex Enterlite or Joey Kangaroo (a bit heavier and bulkier then the previous two but sometimes easier to get through insurance/medicaid). You can put the feeding pump in a small toddler size backpack and then the child can carry it around with them. If you go to http://www.parent-2-parent.com/forum website and join you can go to the tube feeding forum and search the post for pictures of the mentioned set ups. A lot of parents have posted pics of toddlers as small as 18lbs sporting a light weight pump in a backpack. If you are just worried about securing the tube when not being fed then that isn't as big a deal. You can either tuck it in their underwear, create a tape tab on the tube and pin it to their clothing or tape it directly to skin or you can use a catheter securement device like The Bone to hold it stationary.

The care you describe is pretty typical except for the fundo generally most ped GI's don't do a fundo's with a gastrostomy automatically because they often can cause as many problems as they solve. Yes, it is normal for a peg to be put in for about 6 weeks first to let the tract heal. Those six weeks may seem like forever but they will go quickly, then you can worry about what type of g-tube button you want and fighting with insurance to provide replacements often enough.

We just had to have a gastrostomy revision in Jan 08 due to his old site deteriorating they needed to create a new gastrostomy stoma. We did not have to hold him still at all. He was allowed to resume normal activity as soon as he was released from the hospital (Even though my child can't walk he crawls and rolls everywhere) but then again my GI didn't opt for an invasive surgery so that may be the difference in post op care you are describing. We were in the hospital 2 nights but also minimal low level hospital supervision. Mainly the stay was to make sure things were ok since he is 100% dependent on his tube feeds. The other reason was that they had to give him a couple days IV antibiotics to make sure the infections on the old site didn't spread to the new site.

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Old 12-09-2008, 07:02 AM   #3
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Re: G-Tube Feeding

I would not try to limit your child's activity, just make sure you keep the tube up and out of the way as much as possible. If she's on a pump, see if you can get one that is small (like the zevex infinity) and use the backpack. Roll up the extra tubing and stuff it in the backpack. You can almost make the tube disappear by doing this. Sometimes I see kids with zevex bags and you'd never know they were tube-fed. I only notice because I recognize the bag....it's the same one my DD has!. If she's bolus fed, just tuck the tube in her waistband.

Depending on what kind of peg they put in, it's probably not easy to accidently pull out. I pulled on DD's so many times I'm surprised it didn't come out! Once you get switched to a button, those pop out all the time. But it's no big deal to just pop them back in.
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Old 12-10-2008, 07:10 AM   #4
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Re: G-Tube Feeding

I, too wouldn't worry about her activity. Chances are, if she's up for jumping and climbing, then it's ok for her to do. I would just make sure that the PEG is tucked in or taped down. A good tip I got was to make a tape tab close to the connection end of the tube and then pin it to her waistband or shirt. It should help keep it from tugging on the stoma too much in case it were to get pulled accidentally. Otherwise, let her do what she's comfortable with, even if it's playing and jumping.
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Old 12-10-2008, 05:08 PM   #5
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Re: G-Tube Feeding

Thank you all for your responses. The inevitable happened today - the baby tugged on it hard enough, and it came partially out. She was jumping and climbing, no problem :-) She had something the baby wanted, and out came the tube! She didn't realize it was hanging down past her shirt front. She usually tucks it into a "belly band" as they called it in the hospital. But she hadn't and the baby tugged on it to get what he wanted. He's a year, so he really has no understanding of it. She started screaming, and I went over and without thinking just pushed it back in. Now I find out I should have let it come out and brought her to the hospital. It took them all day to tell me this, so I have to make an appointment and go in the morning. They told me not to worry, and just bring her in.
She does not tolerate bolus feeds yet, they are hoping she will someday. For now she is on overnight continous. We are trying to get her to 700 ml/night. She is on peptomin jr, and currently at 63 ml/hr for 10 hrs. I hope to be able to give her some daytime feeds, as she is still loosing weight, but they want her to eat - she is capable, just not a lot at a time. She has never been able to tolerate large or even regular amounts of food.
Thanks again for the responses!
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Old 12-14-2008, 06:57 PM   #6
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Re: G-Tube Feeding

I have a five year old with a g-tube and my three year old used to pull it out almost daily! My son has a nissen (fundoplacation) also. He currently eats nothing po.

It's hard having the tubes, I know- but it gets easier. I would give more advice but the posts pretty much covered it all. Good Luck - Natalie
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Old 12-17-2008, 11:51 PM   #7
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Re: G-Tube Feeding

Our DS1 didn't move, but when he had a long tube versus a peg, we would just wrap an ace bandage around him. It made sure that it was securely hidden. You might want to try that b/c then no one can get to it.

You'll love the peg. It makes things so much easier.
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Old 12-19-2008, 02:18 PM   #8
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Re: G-Tube Feeding

My son was born at 25 weeks and didn't eat PO until around 11 months( which was a miracle). He didn't do any running or jumping but he did a whole lot of tugging. I would ask the doctor who did the G tube to do what my doctor called a STOMA cover. It was a simple piece of flesh covered tape..we taped over it for nonfeed times and removed the tape for feed times. The proper word is not TAPE, forgive me but I really forget the name.
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Old 01-05-2009, 07:20 PM   #9
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Re: G-Tube Feeding

my youngest son who is 13 months just had a g-tube placed in oct. he has a mic-key button. he's crawling and becoming really active. i always worry about him getting it caught on something and it coming out. or if someone is holding him and not paying attention to it. he is only on overnight feeds so we dont' have to worry about the pump during the day. although we do have the backpack as mentioned above. i'm just waiting for the first time it gets pulled out.
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Old 01-07-2009, 02:55 PM   #10
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Re: G-Tube Feeding

Thanks guys. The dr gave us something called a "belly band" whish is like a mesh circle, basically. She didn't like the ace, but will wear the belly band. We get our mic-key in feb, so not long now :-) of course, now I am getting used to the tube!
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