Guest guest Posted July 30, 2000 Report Share Posted July 30, 2000 In a message dated 7/30/00 1:38:54 AM US Eastern Standard Time, JMurraybel@... writes: << I wanted to ask if anyone had any suggestions on how to make these catheters last longer? >> I know how hard it is to keep a catheter in place with an active one. Here is a suggestion that I have found very useful and it works !!!!! ***** Take a baby bottle nipple, make the hole bigger (by cutting it cross wise), and thread the catheter through the hole (pulling snug so that the base of the nipple is flat against the stomach). Tape the base of the nipple to the stomach. This holds the catheter upright and makes for less pull at the stoma. This worked for Tryny and Zak when they had them before they got their buttons. Hope it helps you as well. Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2000 Report Share Posted July 30, 2000 Elaine, Do they not have buttons over where you are? I think that it would benefit Jack much more than the tube and so much nicer for them. Also, it can be replace without surgery right in the office or at home if it is a Mickey type button. I would start to ask about that if I were you. Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476 G-tube problems!! Hi All,As I mentioned earlier, Jack's PEG fell out and He has a temporary catheter type gastrostomy tube at the moment. It is driving me nuts!!! The balloon burst twice last week and we had to go and have it replaced and I can't see this one lasting much longer. His paed spoke to the surgeon's secretary last week and she said they could only put him on the waiting list for a new PEG and the waiting list is 3 MONTHS LONG!!!! His paed said that there is no way we could wait that long so she has sent a strongly worded letter asking to have it replaced within the next few weeks. If he could be anaesthetised here they could have done it right away but they won't touch him here and he has to g to Glasgow.Anyway, I wanted to ask if anyone had any suggestions on how to make these catheters last longer? I have taped it across his tummy but he is just so active and he has also started pulling at it which he never ever did with his original one. I just hope we don't have to wait too long for the new one. We are scared to go too far from home in case we have to come back to hospital.For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2000 Report Share Posted July 30, 2000 , Yes,they do have buttons over here but it depends on the surgeon which type they use. I am certainly going to ask if it's possible to have one as it would be much easier. I suppose cost will come into it as well. The PEG is supposed to last for at least 2 years whereas buttons have to be replaced every 3 mths or so don't they? These temp.catheters cost £32 each and he's had 3 within a week so if he carries on like this he'll be costing the NHS a fortune!!! Elaine mum to Elise (8yrs) & Jack (3yrs) CHaRGE Dumfries,Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2000 Report Share Posted July 30, 2000 Debra, Thanks for the suggestion. It sounds like a very good idea to me and I''ll give it a go. Although we only live 5 mins away from the hospital it is still a big hassle having to trail up there more than is necessary. We see enough of the place as it is!!!! Elaine mum to Elise (8yrs) & Jack (3yrs) CHaRGE Dumfries,Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2000 Report Share Posted July 30, 2000 Elaine, The " button " g tubes last about 1 year. V. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2000 Report Share Posted July 30, 2000 Elaine, Kennedy's buttons have lasted up to 9 months. The BARD brand buttons have been taken off the market (here in Canada anyway) as they are "leakers"!!!! Kennedy will be getting a new "Kangaroo" Button in 2 weeks and from all reports they are VERY reliable and non-leaky so they should last even longer. I hope Jack gets a button soon, they are so UNBELIEVABLY wonderful compared to those old tubes hanging out! Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476 Re: G-tube problems!! ,Yes,they do have buttons over here but it depends on the surgeon which type they use. I am certainly going to ask if it's possible to have one as it would be much easier. I suppose cost will come into it as well. The PEG is supposed to last for at least 2 years whereas buttons have to be replaced every 3 mths or so don't they?These temp.catheters cost £32 each and he's had 3 within a week so if he carries on like this he'll be costing the NHS a fortune!!!Elaine mum to Elise (8yrs) & Jack (3yrs) CHaRGEDumfries,ScotlandFor information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2000 Report Share Posted July 31, 2000 Hi Elaine! We used a Holister clamp during the Foley catheter days and it really helped. Cheryl, , (6), (4, CHaRGE) MI >>> JMurraybel@... 07/30/00 02:38AM >>> Hi All, As I mentioned earlier, Jack's PEG fell out and He has a temporary catheter type gastrostomy tube at the moment. It is driving me nuts!!! The balloon burst twice last week and we had to go and have it replaced and I can't see this one lasting much longer. His paed spoke to the surgeon's secretary last week and she said they could only put him on the waiting list for a new PEG and the waiting list is 3 MONTHS LONG!!!! His paed said that there is no way we could wait that long so she has sent a strongly worded letter asking to have it replaced within the next few weeks. If he could be anaesthetised here they could have done it right away but they won't touch him here and he has to g to Glasgow. Anyway, I wanted to ask if anyone had any suggestions on how to make these catheters last longer? I have taped it across his tummy but he is just so active and he has also started pulling at it which he never ever did with his original one. I just hope we don't have to wait too long for the new one. We are scared to go too far from home in case we have to come back to hospital. For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2000 Report Share Posted July 31, 2000 Hi Cheryl, Thanks. What is a Holister clamp? Elaine mum to Elise (8yrs) & Jack (3yrs) CHaRGE Dumfries,Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2000 Report Share Posted July 31, 2000 It is an adhesive backed opening to slide over the tube and adhere to the skin so that the tube is not easily removed accidentally. Cheryl, , (6), (4, CHaRGE) MI >>> JMurraybel@... 07/31/00 04:23PM >>> Hi Cheryl, Thanks. What is a Holister clamp? Elaine mum to Elise (8yrs) & Jack (3yrs) CHaRGE Dumfries,Scotland For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2000 Report Share Posted August 1, 2000 In a message dated 7/30/2000 3:31:24 PM Central Daylight Time, gweir@... writes: << The BARD brand buttons have been taken off the market (here in Canada anyway) as they are " leakers " !!!! >> , How long has it been since they were taken off the market in Canada? I have had wonderful luck with the BARD and I would hate to change to a different brand. I hope they don't take them off the market here in the U.S. had one BARD last just under 3 years (when they first came out with them here). Now we get about 18 months out of one if she doesn't pull it out and my husband is not around to put it back in. Sheryl, Mom to 13 CHARGE, and Mitch 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2000 Report Share Posted August 1, 2000 Hi Sheryl! We also have a BARD button and have had great success with it. Our daughters button usually lasts 2-3 years. We have not had any leakage problems eeither. I would definetly hate to see the BARD button be discontinued! Its great reading everyones letters and seeing how many kids out there have BARD buttons, lol. Well, got to run, take care, great seeing you on here. Tia, mom to age 11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2000 Report Share Posted August 1, 2000 Hi , We only put her milk through the button. We one time tried pureed food and clogged the button up, what a mess that was. I know when we use certain meds through the button that have granules, we got to flush really well or it will come back at us. now eats pureed foods orally, but all her liquids and meds go through the button. Couldnt live without it, lol!! Talk later, Tia, mom to age 11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2000 Report Share Posted August 1, 2000 Sheryl, Since January here. I am hearing really good things about these Kangaroo buttons so I am open to it as we have had MAJOR leakers with these BARDS, the last one has really been the pits. I"m ready to try something new although I'm not crazy about the "bright orange" colour of it. Something meant to be under clothes and inconspicuous colored orange, kind of defeats the purpose eh? Well, I'd give a call to your supplier of BARD buttons and see if they've heard anything regarding them being taken off the market stateside. Good luck, Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476 Re: G-tube problems!! << The BARD brand buttons have been taken off the market (here in Canada anyway) as they are "leakers"!!!! >>,How long has it been since they were taken off the market in Canada? I have had wonderful luck with the BARD and I would hate to change to a different brand. I hope they don't take them off the market here in the U.S. had one BARD last just under 3 years (when they first came out with them here). Now we get about 18 months out of one if she doesn't pull it out and my husband is not around to put it back in.Sheryl, Mom to 13 CHARGE, and Mitch 14For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2000 Report Share Posted August 1, 2000 , We fed baby food and milk mixed together for at least 8 years through her BARD. We just switched to Pediasure in March. I think this one has been in since October and still not having any problems. Sometimes food builds up around the valve and causes them to leak more. Our surgeon suggests giving about 1 to 2 ounces of carbonated beverages once a week to help keep that gunk from building up and causing problems. I will give Jess some diet Mountain Dew on a rare if it seems to be starting to get the build up. But with just giving her formula now, we don't seem to have that problem. I called BARD Customer Service for the USA and they are not aware of any discontinuation of the product. There was a recall earlier this year but they are not being discontinued here. She was not aware of the discontinuation in Canada or anywhere in the world. She suggested calling them to see if it was a total discontinuation or just a recall. Sheryl, Mom to Mitch 14 and 13 CHARGE Iowa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2000 Report Share Posted August 1, 2000 Sheryl, What was the BARD recall on? Tia, mom to age 11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2000 Report Share Posted August 1, 2000 Tia, What do you feed in her button? Just curious how we managed to get so many "bad" buttons... We feed Kennedy baby food (fruit, vegs, meat), pablum, and her formula. Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476 Re: G-tube problems!! Hi Sheryl! We also have a BARD button and have had great success with it. Our daughters button usually lasts 2-3 years. We have not had any leakage problems eeither. I would definetly hate to see the BARD button be discontinued! Its great reading everyones letters and seeing how many kids out there have BARD buttons, lol. Well, got to run, take care, great seeing you on here. Tia, mom to age 11For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2000 Report Share Posted August 1, 2000 Tia, Maybe that's why Kennedy's leaks, all the food we put in it. This Kangaroo is supposed to have a better opening and not get clogged up as much, you can clean it out much easier too. Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476 Re: G-tube problems!! Hi ,We only put her milk through the button. We one time tried pureed food and clogged the button up, what a mess that was. I know when we use certain meds through the button that have granules, we got to flush really well or it will come back at us. now eats pureed foods orally, but all her liquids and meds go through the button. Couldnt live without it, lol!! Talk later, Tia, mom to age 11For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2000 Report Share Posted August 1, 2000 Sheryl, It doesn't really matter to me, I'm ready to try anything else at this point after all the leaky messes I've cleaned. From what the lady at the hospital told me, they can't get them anymore, so I am not sure if that means a discontinued or not. She said they were taken "off the market" whatever that means! Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476 Re: G-tube problems!! ,We fed baby food and milk mixed together for at least 8 years through her BARD. We just switched to Pediasure in March. I think this one has been in since October and still not having any problems. Sometimes food builds up around the valve and causes them to leak more. Our surgeon suggests giving about 1 to 2 ounces of carbonated beverages once a week to help keep that gunk from building up and causing problems. I will give Jess some diet Mountain Dew on a rare if it seems to be starting to get the build up. But with just giving her formula now, we don't seem to have that problem.I called BARD Customer Service for the USA and they are not aware of any discontinuation of the product. There was a recall earlier this year but they are not being discontinued here. She was not aware of the discontinuation in Canada or anywhere in the world. She suggested calling them to see if it was a total discontinuation or just a recall. Sheryl, Mom to Mitch 14 and 13 CHARGEIowaFor information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2000 Report Share Posted August 2, 2000 Okay, big decision time. Nichole is going to be getting a G-tube in the next few months and I was wondering, when it comes time to get a button, which one is the best? I have a 2 year old also, so I need one that is realitivly easy maintenance. Any advice would be greatly appreciated. Thankx, Mother to Nichole 6 mos.(CHARGEr) & Carlie 2 yrs ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2000 Report Share Posted August 2, 2000 , I prefer the Bard myself. It sits flat against the stomach and " doesn't " come out. Tryny pulls on his all the time playing with it (and if Tryny can't get it out then it won't come out !!!!). Granted the tubing doesn't lock in place, but I just put tape across it on the stomach and it stays. When they put Zaks in, I request a Bard instead of the Mickey they were ready to do as Zak rolls to his stomach a lot and has a lot of therapy on his stomach. But that is just my preference. Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2000 Report Share Posted August 2, 2000 Aubrey has a mic-key button also. We only had to wait a couple months after the g-tube to get the button put in. The nice thing about it is the locking mechanism that keeps the tube from coming out when feeding. Also, we don't have to put any gauze or anything underneath it. It is very easy to change. It stays in place by way of a balloon that you fill with water (about 5 ml). There are 2 openings on it, one for food to go in, and the other for filling the balloon with water. Every few months we have to check the water level in the balloon and add water if it is low. We also have to change it out usually after 5 or 6 months because the balloon eventually breaks. We always have a spare on hand and it takes just a couple minutes to swap out, and is painless - Aubrey laughed during the last change. It also has an anti-leak valve so that it does not leak. The only negative that I can really think of with it is it does stick out probably about a half inch or so instead of being flat like the BARD. We were concerned about that when Aubrey was younger because we were afraid that it would affect her getting on her stomach, etc. However, I don't really think that it did cause any problems with that because once she got strong enough she began rolling onto her stomach and it didn't seem to bother her. Since we never used the BARD (our doctor would not put the BARD in - he didn't like the flange device or whatever it is that keeps it in place and said it was a lot more painful to swap out), I can't comment on it. I have also never heard of the kangaroo button is talking about, so I am kind of wondering how it works? Bradley father to Aubrey (21 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2000 Report Share Posted August 2, 2000 , You'll have to wait until she's had the g tube for about 6 months I believe so her stoma (opening) is in good shape and well established. I think there are probably certain little quirks to all of the buttons but I'd still take them any day over the long tube sticking out. You have some time so I'll be able to let you know how Kennedy makes out with this Kangaroo button. There are lots of BARD users here on the list and I believe a fair number of mickey button users as well. We found the BARD to pop open a lot and leak a lot in our experience. But, not ALL them. I'd say about 70% of the BARD's we had had the pop open and leak tendency. The woman at the children's hospital said that they had many many complaints. That's all I can tell you about BARD. Hopefully some of the other Mic key families will jump in and give you their thoughts. When Kennedy gets her Kangaroo, I'll take a picture of it and send it to you so you can see what it looks like. I always wondered what a button looked like on a child before Kennedy got hers and couldn't find a pic anywhere on the net, so I posted a pic of Kennedy with her button (it's an awfully scanned way too bright pic, but you can see it) it's at: www.geocities.com/kawfolks/kkbutton.html Good luck and remind me about telling you about the Kangaroo, it's supposed to be good from what I hear... Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476 Re: G-tube problems!! Okay, big decision time.Nichole is going to be getting a G-tube in the next few months and I was wondering, when it comes time to get a button, which one is the best?I have a 2 year old also, so I need one that is realitivly easy maintenance. Any advice would be greatly appreciated.Thankx,Mother to Nichole 6 mos.(CHARGEr) & Carlie 2 yrs________________________________________________________________________Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.comFor information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2000 Report Share Posted August 2, 2000 Hi! has a Mic-Key and we love it. Easy maintenance, we change it ourselves at home (no trips to the doc for button changes!), and he first had one about one month after his g tube surgery. I think that they said something like between 1 and 2 months after surgery, they could put the Mic-Key button in. Just learned results of 's pH probe study-he is not refluxing : ) Must be the hiatal hernia that is causing him some discomfort. We are pleased that there is no need for additional meds or surgery at this time! : ) Cheryl, , (6), (4, CHaRGE) MI >>> gweir@... 08/02/00 07:15AM >>> , You'll have to wait until she's had the g tube for about 6 months I believe so her stoma (opening) is in good shape and well established. I think there are probably certain little quirks to all of the buttons but I'd still take them any day over the long tube sticking out. You have some time so I'll be able to let you know how Kennedy makes out with this Kangaroo button. There are lots of BARD users here on the list and I believe a fair number of mickey button users as well. We found the BARD to pop open a lot and leak a lot in our experience. But, not ALL them. I'd say about 70% of the BARD's we had had the pop open and leak tendency. The woman at the children's hospital said that they had many many complaints. That's all I can tell you about BARD. Hopefully some of the other Mic key families will jump in and give you their thoughts. When Kennedy gets her Kangaroo, I'll take a picture of it and send it to you so you can see what it looks like. I always wondered what a button looked like on a child before Kennedy got hers and couldn't find a pic anywhere on the net, so I posted a pic of Kennedy with her button (it's an awfully scanned way too bright pic, but you can see it) it's at: www.geocities.com/kawfolks/kkbutton.html Good luck and remind me about telling you about the Kangaroo, it's supposed to be good from what I hear... Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 Re: G-tube problems!! Okay, big decision time. Nichole is going to be getting a G-tube in the next few months and I was wondering, when it comes time to get a button, which one is the best? I have a 2 year old also, so I need one that is realitivly easy maintenance. Any advice would be greatly appreciated. Thankx, Mother to Nichole 6 mos.(CHARGEr) & Carlie 2 yrs ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com ------------------------------------------------------------------------------ ------------------------------------------------------------------------------ For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2000 Report Share Posted August 2, 2000 Hi, I like the mickey button g-tube. I find it easy to replace and my daughter 11 years old has a clean healthy site. We also have used a kangaroo pump at night almost all of her life and like it's ease and simplicity. I tried a zevex pump for a while but it false alarms tooo much at night. Peggy > , > You'll have to wait until she's had the g tube for about 6 months I believe so her stoma (opening) is in good shape and well established. I think there are probably certain little quirks to all of the buttons but I'd still take them any day over the long tube sticking out. You have some time so I'll be able to let you know how Kennedy makes out with this Kangaroo button. There are lots of BARD users here on the list and I believe a fair number of mickey button users as well. We found the BARD to pop open a lot and leak a lot in our experience. But, not ALL them. I'd say about 70% of the BARD's we had had the pop open and leak tendency. The woman at the children's hospital said that they had many many complaints. That's all I can tell you about BARD. Hopefully some of the other Mic key families will jump in and give you their thoughts. When Kennedy gets her Kangaroo, I'll take a picture of it and send it to you so you can see what it looks like. I always wondered what a button looked like on a child before Kennedy got hers and couldn't find a pic anywhere on the net, so I posted a pic of Kennedy with her button (it's an awfully scanned way too bright pic, but you can see it) it's at: > www.geocities.com/kawfolks/kkbutton.html > Good luck and remind me about telling you about the Kangaroo, it's supposed to be good from what I hear... > > Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to Graeme > New Brunswick, Canada > Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 > ICQ #1426476 > > Re: G-tube problems!! > > > Okay, big decision time. > > Nichole is going to be getting a G-tube in the next few months and I was > wondering, when it comes time to get a button, which one is the best? > > I have a 2 year old also, so I need one that is realitivly easy maintenance. > Any advice would be greatly appreciated. > > Thankx, > > > Mother to Nichole 6 mos.(CHARGEr) & Carlie 2 yrs > > ______________________________________________________________________ __ > Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com > > > -------------------------------------------------------------------- ---------- > > > > -------------------------------------------------------------------- ---------- > For information about the CHARGE Syndrome > Foundation or to become a member please > contact marion@c... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2000 Report Share Posted August 2, 2000 Bradley, I hadn't realized there was a locking mechanism on the mic key - that would be a MAJOR bonus, I cannot even begin to count the times Kennedy's has come out during a feed unbeknownst to us! Then all of the sudden you hear this drip drip drip drip falling on the floor! ARGH! Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476 Re: G-tube problems!! Aubrey has a mic-key button also. We only had to wait a couple months after the g-tube to get the button put in. The nice thing about it is the locking mechanism that keeps the tube from coming out when feeding. Also, we don't have to put any gauze or anything underneath it. It is very easy to change. It stays in place by way of a balloon that you fill with water (about 5 ml). There are 2 openings on it, one for food to go in, and the other for filling the balloon with water. Every few months we have to check the water level in the balloon and add water if it is low. We also have to change it out usually after 5 or 6 months because the balloon eventually breaks. We always have a spare on hand and it takes just a couple minutes to swap out, and is painless - Aubrey laughed during the last change. It also has an anti-leak valve so that it does not leak. The only negative that I can really think of with it is it does stick out probably about a half inch or so instead of being flat like the BARD. We were concerned about that when Aubrey was younger because we were afraid that it would affect her getting on her stomach, etc. However, I don't really think that it did cause any problems with that because once she got strong enough she began rolling onto her stomach and it didn't seem to bother her. Since we never used the BARD (our doctor would not put the BARD in - he didn't like the flange device or whatever it is that keeps it in place and said it was a lot more painful to swap out), I can't comment on it. I have also never heard of the kangaroo button is talking about, so I am kind of wondering how it works?Bradleyfather to Aubrey (21 months)For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
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