Stay Connected

Results 1 to 5 of 5

Thread: G tube dependent

  1. #1

    G tube dependent

    Hi my LCDH son sent home with g tube . Bottles that are tolerated during day tube what was not taking by bottle and night feeds at night . He was doing amazing and taking his whole feeds by bottle other than his night feeding . His acid reflux got worse he started spitting up and bottle feeding got worse from there. He is now no longer taking anything by mouth , he is completely g tude dependent now . I can't even get him to eat baby food or drink some apple water juice . He is getting speech therapy and is being sent for another swallow study to try and figure out what's going on . My question is has any parent ever had a g tube dependent cherub and they eventually start eating on their own ? I can't stand the thought of him never wanting to eat . I'm fine with the night feeds to keep up his weight but I would like to see him eat and drink durning the day . Please help and tell me your stories

  2. #2
    I hope others can offer some help. I've dealt with some feeding issues but not a G-tube. Hang in there!
    Mom to Brooke-3/22/04- Braden-3/13/08-RCDH diagnosed at birth- treated at CHOP- CDH repair at 1 day old- home on day 12- Orchiopexy for undescended testicle (4/13/09)- Myringotomy with tubes bilateral (ear tube surgery-7/6/10)
    North Carolina State Co-Rep http://i291.photobucket.com/albums/l...bon-braden.jpg Braden's video http://www.onetruemedia.com/shared?p...edium=text_url

  3. #3
    Over my years of helping with CHERUBS, majority of gtube babies we do see they will eventually start eating on their own, but in their own time. It varies and each child is so different.

    I don't have personal experience with the gtube. The swallow study is good to do, to check out things. Did they adjust his acid reflux meds as he gained weight? Have they tried different reflux meds to see how he responds. When a child relates eating to pain, they are not going to want to eat.

    Some states have feeding therapy in addition to the speech therapy, something to ask about.
    Tracy - mom to Ian, LCDH diagnosed at birth, 4/3/04. Ian was born at 36 weeks, spent 53 1/2 days in NICU, 7 days on ECMO, surgery was on day 5, 29 days on a vent, 23 days was an oscillating vent, 546 days on oxygen. Inguinal right and left hernias and undescended left testicle surgeries were done on day 48. Currently has heart related medical issues and exercise induced asthma, but is one happy, happy boy!! Also mom to Cole - 13, Shane - 9, and Toby - 4. CHERUBS Parent Advisory Board Member and Co-Chair, Volunteer Co-Coordinator, and Wyoming State Representative.
    email: tmeats@cherubs-cdh.org

  4. #4
    The is getting feeding therapy and he had a swallow study done along with upper GI stugy all came back fine he been on different meds no change but I was given so e great advice buy a doctor they told me to make things available to him this seems to be helping a lot

  5. #5
    Definitely make things available to him and let him play with his food at meal times too. Try a variety of sippy cups too, he may like one over the other. Hope the feeding therapy helps too.
    Tracy - mom to Ian, LCDH diagnosed at birth, 4/3/04. Ian was born at 36 weeks, spent 53 1/2 days in NICU, 7 days on ECMO, surgery was on day 5, 29 days on a vent, 23 days was an oscillating vent, 546 days on oxygen. Inguinal right and left hernias and undescended left testicle surgeries were done on day 48. Currently has heart related medical issues and exercise induced asthma, but is one happy, happy boy!! Also mom to Cole - 13, Shane - 9, and Toby - 4. CHERUBS Parent Advisory Board Member and Co-Chair, Volunteer Co-Coordinator, and Wyoming State Representative.
    email: tmeats@cherubs-cdh.org

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •