Guest guest Posted August 13, 1999 Report Share Posted August 13, 1999 Sclee127@... wrote: > > From: Sclee127@... > > HI > I've never heard of the " BARD " , Maeve has had a " Mickey " up until Sunday, > when it came out !! She's going to the Doctor tomorrow to replace it. I'm > interested in knowing more about the ANTI-REFLUX part. > Maeve's doing wonderfully.....she got her new glasses today !! now its a game > to try & keep them on. Her NEW hearing aides are already out being repaired, > she chewed a hole in one !! The fun never ends..... > thanks, > LEE > (Maeve's nurse) Lee, If Maeve's button came out on Sunday and it's just being replaced now, how have you fed her? Jeanie Colp mom to MacKenzie 14mos.CHARGE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 1999 Report Share Posted August 13, 1999 Jeanie, Funny we go to the same hospital - you'd never know it. Nobody EVER told me about the Coke thing, just the folks here on the list! Scary, eh? > , > Giacomantoneo told us to flush Mac's tube every so often with Coke to >keep any build up clear. That's what they use at the hospital if someone >comes in with a clogged tube. > >Jeanie > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 1999 Report Share Posted August 14, 1999 Rick, It might be worth a try, but we have bought long strips of Velcro and wrapped her up. Took her about 20 or 30 mins to get it down over and start yanking again! I'll ask up at the hospital if they've got an extra one around. There's actually a belt made for tubes, etc that's available in Halifax from a company near the Children's Hospital. I'm going to ask them if I can try one for a day or so while we're down there in September, before buying it. There's no sense shelling out the $$$ if it doesn't work! Hopefully, they'll go for it. Mom to Kennedy 18 mos old CHARGEr, 10, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 > > >Sometimes we use a spare apnea monitor belt (the cloth kind), that fastens >with Velcro. This will cover the G-Button and if they can't touch it then >they will eventually leave it alone. Just a thought. > >Rick >Husband of Lissa >Dad to Conor 20 months With ChARGE >Step Dad to Mallory 14, 7 > > >> ---------- >> From: Graeme & Weir[sMTP:gweir@...] >> Sent: Friday, August 13, 1999 8:32 PM >> To: CHARGEonelist >> Subject: Re: Button Problems >> >> >> >> >> GI doc, ha ha, we've NEVER seen a GI doc. How do you believe that one? >> The >> only ppl she's seen regarding her stomach issues are surgery folks. And, >> the technicians who do the barium tests. We are seeing one for the 1st >> time >> in Sept. I will ask him then if everything's okay down there. Her poor >> stomach is all broken out red and raw as we've had to tape it shut so many >> times and the tape just kills her skin. We've tried every kind of tape as >> well. *shrug* >> >> Mom to Kennedy 18 mos old CHARGEr, 10, 8, and wife to Graeme >> New Brunswick, Canada >> Visit the " Weir homepage " at: >> http://www.geocities.com/SunsetStrip/Palms/5716 >> ICQ #1426476 >> >> >> >> >From: Wipeout518@... >> > >> >, >> >Kennedy is certainly determined!!! I know what these kids are like when >> they >> >make their mind up to do something. When had the tube we got a >> spare >> >button set-up from her GI doc and kept it at home, this way if it did get >> >pulled out you could bring Kennedy to the hosp. with her tube. I was >> told >> >that most hospitals in our area probably would not have a small enough >> tube >> >for on hand. Thankfully we never had to use it, but I was glad I >> had >> >it just in case. >> > >> >If its a stage she in, then hopefully she will outgrow it, and maybe get >> a >> >little wet in the process. What has the GI doc said, could there by >> >something bothering her? >> > >> >good luck, >> >charlene >> > >> >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 1999 Report Share Posted August 14, 1999 > > On the inside, what is the device holding it in place? Is it > possible that THAT is the problem? I think they ought to check soon to be sure > that there is no ulceration on the inside of her stomach if the Bard is too > tight or too loose. Hmmmm-good point . One time a nurse filled 's Mic- Key balloon with 5 ml of water instead of 3.5 ml and he cried until was able to drive him from the surgeons office to work where we removed the extra 1.5 ml and he was fine after that. Since then, we have changed his Mic-Key ourselves. > I do think someone should be looking carefully at the red and broken out skin > and determining if there is a yeast infection that needs topical treatment or > if there is some other kind of infection that needs medicine. Another good thought. It does sound like something is wrong. Our CHARGE kids don't usually complain unless something is wrong. > > Owie, I hope this clears up soon! Ditto > wendy Cheryl, , (5), (3, CHaRGE) MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 Thanks for the kind thoughts, guys. Today was much better, if I trusted my intuition, I would say it's 98% behavioural. I tried to not tape her at all today and her belly looks improved already! Hope it keeps up... Mom to Kennedy 18 mos old CHARGEr, 10, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 > > On the inside, what is the device holding it in place? Is it > possible that THAT is the problem? I think they ought to check soon to be sure > that there is no ulceration on the inside of her stomach if the Bard is too > tight or too loose. Hmmmm-good point . One time a nurse filled 's Mic- Key balloon with 5 ml of water instead of 3.5 ml and he cried until was able to drive him from the surgeons office to work where we removed the extra 1.5 ml and he was fine after that. Since then, we have changed his Mic-Key ourselves. > I do think someone should be looking carefully at the red and broken out skin > and determining if there is a yeast infection that needs topical treatment or > if there is some other kind of infection that needs medicine. Another good thought. It does sound like something is wrong. Our CHARGE kids don't usually complain unless something is wrong. > > Owie, I hope this clears up soon! Ditto > wendy Cheryl, , (5), (3, CHaRGE) MI --------------------------- Quote Link to comment Share on other sites More sharing options...
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