Hi all,

Allie has been on an NG tube for almost 4 weeks. It has made her oral aversion worse, and she sleeps about 2 hours a night with it in b/c she is miserable. She is gaining good now and doing more things than she used to do and is so happy after we tube feed her (still only taking about 2-3 ounces per day of bottle) so we know she is going to need a more permanent tube (and I want to get rid of the NG tube).

I did some checking and see that there is a PEG tube and a G tube (button). Since Allie is not yet crawling, but learning (almost 7 months) should I demand a G tube so the PEG tube doesn't get in her way?

Thanks for any help you have.

PS - Becky if you read this - I am so excited for Daniel that he drank apple juice! That is wonderful news! :razzing:

Christyn
Allie 9-2-05

Christyn...I have no advice, as I am not experienced with tube feeding, but wanted to wish you luck at the appointment, and keep us posted!

No advice here either as my experience with tube feeds and consideration of a peg tube was for a my Mother ( a stroke victim).

I would think that a g-tube is the best but again I have no experience with that. It just seems to be the next step I see on the boards here.

Sending you lots of best wishes and {{{hugs}}}

PS - Becky if you read this - I am so excited for Daniel that he drank apple juice! That is wonderful news! :razzing:

Aw, thanks!

Even though Daniel has a G tube, I'm actually not well versed in the different kinds you can get. D's GI suggested the Genie button, which I'd never heard of, but when I asked him why he'd chosen that, he just thought it'd be best for D. And if we didn't like it, we could change it to something else. (Right, like I wanted to go through that.) Anyway, we lucked out, and the Genie button has worked very well for him.

I expect if you share your concerns, your GI will know what'll work best for Allie. (Then I'd go ahead and research it just to be sure!)

I'm glad Allie is growing and thriving with the extra cals from the NG tube. But those things are a major pain, aren't they? Is she miserable at night because you feed her through the night, or is it just general discomfort from the tube? D generally slept pretty well with his, but we only fed him at night a couple of times, and I was always a wreck bc I worried he'd gettting wrapped in the tubing.

Good luck, Christyn! Let us know what happens!

Hi,
Hannah has a g-button and it works. We are having some problems but I think it is an allergy(possibly the silicone) or something. The problem we are finding is long feeds. Hannah started crawling a few weeks ago and now we have to follow her to make sure she doesn't get too far ahead of the pump and pull things out(She has pulled the connection apart a few times and made a big mes). We are working at getting her to do either bolus feeds or short feeds over 1/2 an hour so she can be free from the pump as much as possible.
She was being fed over 10 hours straight and that was a pain since she is everywhere!!
We did the Ng-tube for a month also and she pulled it out everyday so doing the g-button surgery was definitely the right choice for us.When she is not connected to the pump you don't even notice it is there
Good luck!!

We also have a button now and I must say we are in love(if we had to be) Emily first had a NG tube and they told us it would be in for 2 weeks till her esoughtitis cleared well 5 1/2 months later we still had it... to make a long story short we got a peg tube and had that 4 3 months and then the tube would get a pin hole here and there and then finally we had to switch over to a button and things are good. We were so happy when we got the ng tube out we were the happiest people on earth!!! It was the best!!! Emily would pull it out all the time and she was a whole new baby every time it would come out and then when it went back in she was unhappy again. she is crawling and everything now and we have to follow her around withthe pump but we have a pretty cool pump. As far as the last question i just noticed the peg tube does have extra tubing but it never bothered us. Our GI said they always started there kids with a peg and then in 3 months went over to a button. when we had something cute or she was cruising around we either taped it up or tucked it under her onesie it worked fine. I wish you the best of luck. If you have any questions feel free to message me. I hope things work out for your little one! Beth

Tucker has had both the button and the PEG. They both have their pitfalls and benefits. The button is great because you can take it off and he can do tummy time (not yet crawling) without worrying he's going to pull it out by rolling over or something. But, since Tucker retches a lot it was a pain to get the extension hooked up quickly. His button came out last weekend and we switched back to the PEG. We just tuck it into his clothes if he's going to be moving around a lot.

Immediately following surgery, he had to have the PEG for 3 months and then switched to button--I think that's pretty standard for g-tube placement.

Good luck!

I was told by our GI that the peg was the first procedure/tube required as a tract needed to be formed for the g-tube ( button) to be placed. We have had the peg now since Jan 4 and since our 11month old is a crawler/pre-walker we are looking forward to the button.
Just this weekend alone he stepped on the peg and yanked it out causing major pain in his site. This is a continuous problem for me/him as he is getting more and more mobile. We only night tube feed him and periodic feeds during the day through the tube.
Hope this helps.

I also thought that three months with the PEG before changing to a button was the rule, but for some reason our GI changed Daniel's to a button after only four weeks. Maybe because we have an unusual kind? Maybe because I was going crazy?