PEG tube placement for son

Discussion in 'disABILITIES Community Board' started by nuts4wdw, Mar 6, 2011.

  1. nuts4wdw

    nuts4wdw Have a disney day!!!

    Joined:
    Sep 12, 1999
    Messages:
    452
    Hi,
    My little guy is going in on Wed. for a PEG tube. Don't know any parents with gtube kiddo, and thought I'd see if anyone here had any perils of wisdom. My son is 2 and very mobile. He has a myriad of stuff going on, hypertension, narrowing airway, had reflux until he had a fundoplication, history of brain injury after birth, swallowing problems, developmentally delayed, seizures. . . . He isn't eating enough calories or getting enough fluids so we are going this route to insure that he doesn't sustain kidney damage. So anyone have any hints or tips. I've checked the parent 2 parent site, but there is just something about "the disboards", or should I say my 2nd family. Thanks everyone!
     
  2. twinmum

    twinmum DIS Veteran

    Joined:
    Jul 24, 2006
    Messages:
    799
    Sending a virtual hug...

    Our son (now 12) had a g-tube placed at age 3. He and his twin brother were born @ 26 weeks. He has cerebral palsy, had reflux (and had the fundo as well), and other medical issues. He has always been able to eat by mouth, but the GERD really put him off eating. While the process of adjusting to g-tube is stressful, I know, you'll soon be more adept than many nurses at handling you child's tube. And you'll know that you have the ability to give your child the nutrients he needs...it was actually a huge relief for me...but it does take some getting used to.

    We're hoping our son will be able to be tube-free eventually, but for now, it's still a blessing. It was one of the best decisions we ever made.

    All the best!
     
  3. goofieslonglostsis

    goofieslonglostsis DIS Veteran

    Joined:
    Nov 23, 2007
    Messages:
    2,641
    First up; good luck tomorrow with the nerve wrecking waiting. :thumbsup2

    You might want to also check out this board; http://www.inspire.com/groups/oley-foundation/ (and their mainsite, as it also has a lot of great base info). Many folks on there with all kinds of feedingtubes, including moms of children with a feedingtube. I've personally found it the most valuable board online so far about this subject, for both information and a good atmosphere.
     

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