Any moms of kids with a Gtube?

spiderbride531

Our 13 month old daughter got an NG tube at 4 months and a Gtube and Nissen at 6 months.  She's had a host of GI issues since birth.  We are hoping to wean off of her tube in a few months!  I'd love any advice/support.  I'm nervous about weaning off of her tube because of her Nissen and we still have to vent her numerous times a day.  Thanks for any advice!!

A2TP

My daughter had an NG tube at 3 weeks and a g-tube at 2 months due to aspirating when swallowing. We just removed her g-tube last night at 14.5 months! We used it until she was 6 months old and did 3 months of 3x/week feeding therapy to get her swallowing thickened liquids safely. During our journey I found the Feeding Tube Awareness Facebook page to be an incredible resource.

-T-

DS is 2 and has had his gtube since 2 months. He had a nissen this past October which has been awesome. He still does vomit once per week or so, but I have never thought about venting after the gtube is gone! I have no idea how to relieve that. I guess it's something they will just have to learn to cope with. We are doing feeding therapy weekly seeing almost no impovement. It just takes time I guess.

JoJoGee

DD has a Gtube, but no nissen. She is 3 and we are still working on feeding. And, it looks like its going to take a while (she's interested, but the oral motor piece is not where it should be). DD doesn't require venting. But, two thoughts come to mind (1) Have you tried burping like you would with a typical baby? (2). Maybe your daughter needs prevacid. My DD is on prevacid and it has helped her tremendously.

thetwinkies&Vivi

Lucy got her Gtube after a Nissen wehn she was 2.5 months. She had severe reflux that caused an ALTE and was transported to the hospital when we found her grey and unresponsive. Her reflux was also found to be causing unsafe desats. Her nissen really h3lped but then we battled tube issues for a long, long time. The tube site never really ever looked good and her stomach acid would eat through tubes in a course of weeks. She tolerated PO feeds well for the most part and we really only had to use tube feeds when she was ill. Her tube was removed shortly before she turned one. At that point she was able to pass gas effectively enough, and we hadn't had to vent in over a month. Twp weeks later, her site was surgically cleaned and closed.

After the removal of the tube, she endes up being hospitalized because she aspirated on vomit when she couldn't pass it. Luckily, since then, her nissen has loosened and she can now vomit and burp well.

Definitely check out feeding tube awarness page on FB, super helpful.

Justinlove

LA has been NPO since 20 months (just turned 5). She is an aspirator so our challenge is different. She will have another swallow study this summer to see if there has been any change. Definitely check out FTA (I designed the logo!).

Justinlove

Forgot to mention...she does not have a Nissen so venting is not something we have to do. If you join the FTA FB page, they will post your question to the group and I KNOW someone will have a similar situation!

spiderbride531

Thanks ladies!! I'm on the FTA group on facebook, but thought I'd ask here first.  DD is on Prevacid and vomits through her Nissen 3/4 times a week.   She was on TPN for 10 days when she was 3 weeks old, then she had an ND tube, then an NG tube, and then went to PO feeds until she was 4 months old.  She aspirates as well.  It has gotten somewhat better.  She also has gastroparesis, so her Nissen wasn't done as tightly as some.  Glad to know I'm not the only one around here with a tubie!!

Justinlove, that's awesome!  I like their logo!!! :-)

spiderbride531

Also, moms of kids who have weaned off of their tubie, did you use a feeding clinic, or just your GI and dietician?

Jenrn2203

Following.. Our 24 weeker has a gtube and is now 11 mo adj/15 mo actual, in feeding therapy 1x Week and had had significant improvement but stuck how to wean. She eats orally but nibbles and barley drinks -sips here and there