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Erin0922
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Talk to me about GI tubes
Erin0922
member
So, Drew has an NG tube, and has since birth (almost 3 mos). At our last trip to Hopkins, the Drs suggested we start thinking about a GI tube instead. DH and I brushed them off, but now Drew is pulling his NG tube out every day.
So, what are your personal experiences? Pros/cons? I want input from mothers, and not just doctors.
TIA!
*will need feeding tube until about 1yr old, longer if surgery is unsuccessful*
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Re: Talk to me about GI tubes
My son has had a G-tube since he was 3 weeks old. He's now almost 21 months old and still 100% G-tube dependent. I love his G-tube. It's a lot less stress than an NG. It's easy to replace at home. If your son gets a button, it's discreet. No one can see my son's tube unless we pull his shirt up. So it eliminates some of the stares when we go out in public. Stoma care is pretty easy--we just wash around his tube site twice a day with ordinary baby soap and water. We've never had trouble with granulation tissue, but some people do. There are treatments, like steroid cream, that can help.
It's a pretty easy surgery. Not the easiest one my son has ever had, but close. Recovery time is usually 2-3 days in the hospital, just to make sure that their belly has woken back up after anesthesia and they are tolerating tube feeds. Make sure you stay on top of pain control for the first week or so. Since your son already has a NG, you probably know about pumps and backpacks, so I won't get into that.
Best of luck with your decision. It's not easy to decide to put your baby through surgery, but if tube feeding is going to be needed long-term, a G-tube is the way to go, IMO.
As PP said, having your child go through a surgery is never ideal, but the G-tube is definitely the way to go for long-term tube feeding. My son had his put in when he was still in the hospital at 2 months old due to terrible reflux. He is a heart baby and most have reflux issues. We hoped he would be off the tube by now, but he is not. We are seeing a feeding specialist team to figure that out soon. But, our son has had no trouble gaining weight on the tube and the care is easier than the NG tube IMO. You have to keep it clean, but they will go through all the cares with you after the surgery. Also, you will have to buy clothes that have front closure to accommodate for the tube. We have found many cute clothes that work perfectly.
Hope this helps!
Dean got a G-tube when he was 7 weeks old. He had an NG tube and was gagging on it all the time and kept pulling it out. He wouldn't eat anything by mouth with it in. As soon as we got the G-tube in, he started eating! it was still a long road for other reasons (muscle tone, lack of interest in food, and reflux), and he just got it taken out about 3 weeks ago (at 12 months old). He stopped using it at 9 months and I think it was still totally worth it.
The surgery was the first of 3 for him (others unrelated), and the easiest. It was really quick and the G-tube is definitely easier to manage than is an NG tube. We had no problems with granulation tissue, infections, leaking, anything. It was so easy.
Also, just know that some hospitals like to put in a PEG before putting in a button. This requires two different procedures. Had we known this beforehand, we would have gone somewhere that would have just done the button. Either way, it was fine.
Also, know that sometimes G-tube increase issues with reflux. Wish I had known that, too. Although... we probably would still have made the decision to get one.
Really, I didn't want to do the surgery, and if the NG tube had continued to work out for Dean, we probably would have kept it. Docs these days really seem to be big on G-tubes and we wanted to make sure the decision was *ours*, not theirs.
ditto the previous posters. The G tube is leaps and bounds easier to manage than an NG.
My son was a micropreemie and was on an NG for several months at birth, then was eating by mouth 100% for a while. In the mean time he had to have surgery (for an unrelated stomach issue) and didn't do so well with anesthesia, so I was nervous as crap when they had to put the G tube in and go under again. He did have trouble waking again (they tell me he's a "slow metabolizer.") but once we got through that, life was so much better. At that point, he'd had an NG again for some time and it was hell. Constantly pulling it out, the constant worry about the tape.. plus he was having a reaction to the tubing itself.
The G tube was a Godsend. We also havene't had trouble with granulation tissue, so we've been lucky there.
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Ditto what everyone has already said...
My son has had his g-tube for almost a year now but we're hoping to remove it in a few weeks though. He had a Nissen wrap along with the g-tube last year due to severe reflux. I have no experience with the NG as we went right to the g-tube. However, the g-tube has been easier than I thought it would be.
He was in the hospital for 4 days (keep in mind he had both procedures done, so I'm sure your stay would be a little shorter) and everything went pretty well. We were just really overwhelmed since we went from fighting oral feeds to tube feeds but got it all figured out quickly. We also learned that DS doesn't do well with large bolus feeds and continous pump ones were the way to go.
We did have a huge problem with granulation tissue up until the last 6 months or so. The first time we had to have it surgically removed and then every month the surgeon would just do silver nitrate to get rid of it. We also did a daily steriod cream to help control/prevent it. Now we don't do anything and it hasn't come back in a long time.
DS still swims and plays hard with the g-tube and will sometimes pull it out (on purpose--mostly when he's pissed because he has to get his diaper changed instead of playing or whatever.) but it's easy to pop back in and easy to replace.
His Mic-key button pokes out a little through his onesies, but if he wears an pants and a shirt, then it's not really noticable.
All in all, the g-tube has been a lifesaver, literally, and I'm glad we have it.
Best of luck to you.
Ditto to all the previous posters. My DD has a cleft palate and it was a necessity.
We have not had much trouble with granulation tissue, but have had trouble with the g-button balloon bursting. We've been through about 9 buttons in 4 months, which is completely and totally out of the norm. Even our surgeon doesn't know what to do.
We would be LOST w/o the g-tube. She is almost 100% dependent on it and once you get the hang of everything, it's not bad at all.
Feel free to PM me if you have any other questions!