Guest guest Posted June 20, 2002 Report Share Posted June 20, 2002 It is so interesting to me the kids who do not have any difficulty with their g- tubes. Wow! We had infection and granulation and ulcers and deflated balloons and you name it from day one. I was very relieved to get that tube out when Kendra was 11. I think there is something in her immune system and/or her digestive system that led to so many problems with her tube. , that is amazing that you do not want to change the tube in spite of your nursing degree. It just shows you are Mom first...which we have always known anyway. :-) And a darn good one at that. Mom to Camille, and Kendra -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2002 Report Share Posted June 21, 2002 how long have you been using the same MIC-KEY? I find they only last about three months ........ http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2002 Report Share Posted June 21, 2002 how long have you been using the same MIC-KEY? I find they only last about three months ........ http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2002 Report Share Posted June 21, 2002 how long have you been using the same MIC-KEY? I find they only last about three months ........ http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2002 Report Share Posted June 21, 2002 , I find Jack's last anywhere between 3-8 mths. If it's still OK after 8mths I change it anyway but they usually only last around 4mths. Elaine, mum to Elise (10yrs) & Jack (4.5yrs) CHaRGE Dumfries, Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2002 Report Share Posted June 21, 2002 , I find Jack's last anywhere between 3-8 mths. If it's still OK after 8mths I change it anyway but they usually only last around 4mths. Elaine, mum to Elise (10yrs) & Jack (4.5yrs) CHaRGE Dumfries, Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2002 Report Share Posted June 21, 2002 I worked in a children's hospital for years, but we didn't change the buttons. (Mic-Keys were fairly new then, and the docs changed the others) At the group home for medically fragile kids I worked at later, only the supervisor got to change the buttons. After being there awhile I finally got to do it. It was treated like it was this huge deal, then once you've done it, it is nothing. Here we were changing dressings to central lines, hooking up TPN and IL etc..., but we didn't get to change a button. So don't feel bad . Dylan had a g-tube for a year, before I let them try a button. The early ones in my hospital days leaked so bad and had so much trouble with granulation tissue that I was afraid to try with Dylan. He just crawled along with his tube tucked in his diaper. We've had a Mik-Key since and have no trouble. As a nurse we have found that sometimes kids with constant irritation around their g-tubes, actually have yeast although it does not look like the typical yeast rash. kim ---------- > >To: CHARGE >Subject: Re: g-tube >Date: Thu, Jun 20, 2002, 10:34 AM > > It is so interesting to me the kids who do not have any difficulty > with their g- tubes. Wow! We had infection and granulation and > ulcers and deflated balloons and you name it from day one. I was > very relieved to get that tube out when Kendra was 11. I think there > is something in her immune system and/or her digestive system that > led to so many problems with her tube. > > , that is amazing that you do not want to change the tube in > spite of your nursing degree. It just shows you are Mom > first...which we have always known anyway. :-) And a darn good one > at that. > > > Mom to Camille, and Kendra > > > -- > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2002 Report Share Posted June 21, 2002 I worked in a children's hospital for years, but we didn't change the buttons. (Mic-Keys were fairly new then, and the docs changed the others) At the group home for medically fragile kids I worked at later, only the supervisor got to change the buttons. After being there awhile I finally got to do it. It was treated like it was this huge deal, then once you've done it, it is nothing. Here we were changing dressings to central lines, hooking up TPN and IL etc..., but we didn't get to change a button. So don't feel bad . Dylan had a g-tube for a year, before I let them try a button. The early ones in my hospital days leaked so bad and had so much trouble with granulation tissue that I was afraid to try with Dylan. He just crawled along with his tube tucked in his diaper. We've had a Mik-Key since and have no trouble. As a nurse we have found that sometimes kids with constant irritation around their g-tubes, actually have yeast although it does not look like the typical yeast rash. kim ---------- > >To: CHARGE >Subject: Re: g-tube >Date: Thu, Jun 20, 2002, 10:34 AM > > It is so interesting to me the kids who do not have any difficulty > with their g- tubes. Wow! We had infection and granulation and > ulcers and deflated balloons and you name it from day one. I was > very relieved to get that tube out when Kendra was 11. I think there > is something in her immune system and/or her digestive system that > led to so many problems with her tube. > > , that is amazing that you do not want to change the tube in > spite of your nursing degree. It just shows you are Mom > first...which we have always known anyway. :-) And a darn good one > at that. > > > Mom to Camille, and Kendra > > > -- > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2002 Report Share Posted June 21, 2002 Thanks ---likewise to you! Rose's 1st tube was in for 8mos, this last one has been in since Feb. I believe. I think I will put her new tube in myself at the Dr. office on Monday---I really feel I need to do this! It will be better to do it in a controlled situation than in an emergency situation! Last night while I was feeding her her brother jumped over to us trying to rough house a little (she loves this) somehow her tube got pulled, almost out, it was terrible. Lots of crying and coughing. They always said to me that it isn't painful, but Rose always cries when it gets pulled on and she cried when it was changed, sometimes she shows discomfort when I turn it. Ultimately I don't think her body is totally acceptable of it even though there has never been many signs of infection. Beckett _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2002 Report Share Posted June 22, 2002 that makes me feel a lot better.....I was starting to wonder what we were doing wrong....... http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
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