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Old 03-06-2011, 04:00 PM   #1
Have a disney day!!!
Join Date: Sep 1999
Location: Small town Idaho, USA
Posts: 456

PEG tube placement for son

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!
Me (35) , dh (37) , ds (13) , ds (11) , ds (8) and ds (5)

Prescott's Make a Wish pre-trip!
nuts4wdw is offline   Reply With Quote
Old 03-06-2011, 06:26 PM   #2
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Join Date: Jul 2006
Posts: 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!
Sorry, there is just a Pre-Trip Report for Mark's Starlight Wish Trip:
November 2008: http://www.disboards.com/showthread.php?t=1883215
With a brief report on Mark's wonderful Wish Trip!
twinmum is offline   Reply With Quote
Old 03-08-2011, 12:44 PM   #3
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Join Date: Nov 2007
Posts: 2,640

First up; good luck tomorrow with the nerve wrecking waiting.

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.
Does it really work that way? Doors closing, windows opening, can you really allways count on that? I'll just continue to wish, hope and pray to make sure. Knock on wood, one, twice and trice. Still can't believe it, I really get to visit Mickey again..........

Always keep wishing, dreaming and hoping.

Beyond greatfull for so many WDW trips, dear friendship and even a dlrp wish trip in october 2014 to close the Disney chapter. Lifes come and go, memories last for ever.
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