Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 Lesley, I have not a single word to help guide you through this. I am sure there are many who can. You must be having such a difficult time with dealing with all these complications. Do you have the CHARGE Manual? In the back there is a section where all doctor appointments, hospitalizations, procedures, medicine, etc., can be documented. Then when you get together with all the doctors you have the information in your hands at that very moment. It really is a good way to keep track of things. I think that would help look at your sweetie from a historical medical perspective. To get one from the CHARGE Foundation just call n Norbury. Her number is at the bottom of all our posts. She's wonderful and might be able to help a bit. Wishing you ----???? ---Everything! Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 Lesley, Is it even safe for her to go through a second nissen at this point? It's still a fairly invasive, complicated procedure as you know from before. You'll have to weigh all the pros & cons with the docs treating her right now for the other stuff (lungs, etc) to see if she would fair well enough to take that surgery. The little boy I work with had a repeat nissen; this one has lasted now a year and a half almost. I'm sure there are kids here on the listserv that have needed a third, but I can't remember any right off. Good luck with all the decisions. QUESTIONS TO THE EXPERTS ON OUR LISTSERV PLEASE: 1 SHOULD WE RISK A REPEAT NISSEN?? 2 CAN ANYONE WHO HAS HAD A REPEAT NISSEN AND IT HAS BEEN A SUCCESS, TELL ME HOW LONG THE SECOND ONE HAS LASTED from the first one?? 3 HAS ANYONE NEEDED A THIRD ONE DOING?? -- Weir kawfolks@... http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 Lesley, Is it even safe for her to go through a second nissen at this point? It's still a fairly invasive, complicated procedure as you know from before. You'll have to weigh all the pros & cons with the docs treating her right now for the other stuff (lungs, etc) to see if she would fair well enough to take that surgery. The little boy I work with had a repeat nissen; this one has lasted now a year and a half almost. I'm sure there are kids here on the listserv that have needed a third, but I can't remember any right off. Good luck with all the decisions. QUESTIONS TO THE EXPERTS ON OUR LISTSERV PLEASE: 1 SHOULD WE RISK A REPEAT NISSEN?? 2 CAN ANYONE WHO HAS HAD A REPEAT NISSEN AND IT HAS BEEN A SUCCESS, TELL ME HOW LONG THE SECOND ONE HAS LASTED from the first one?? 3 HAS ANYONE NEEDED A THIRD ONE DOING?? -- Weir kawfolks@... http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 Lesley, Is it even safe for her to go through a second nissen at this point? It's still a fairly invasive, complicated procedure as you know from before. You'll have to weigh all the pros & cons with the docs treating her right now for the other stuff (lungs, etc) to see if she would fair well enough to take that surgery. The little boy I work with had a repeat nissen; this one has lasted now a year and a half almost. I'm sure there are kids here on the listserv that have needed a third, but I can't remember any right off. Good luck with all the decisions. QUESTIONS TO THE EXPERTS ON OUR LISTSERV PLEASE: 1 SHOULD WE RISK A REPEAT NISSEN?? 2 CAN ANYONE WHO HAS HAD A REPEAT NISSEN AND IT HAS BEEN A SUCCESS, TELL ME HOW LONG THE SECOND ONE HAS LASTED from the first one?? 3 HAS ANYONE NEEDED A THIRD ONE DOING?? -- Weir kawfolks@... http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 This is what we have said, that there is no way we want her to have another GA, but they have said it will be a surgical decision which every way we look at things, as soon as the lungs recover from this collapse, because we never get very long with amelie before she is sick again. I feel really stressed at what to do, hopefully we can arrange a big get together Its going to be after easter, due to consultants holidays. But from now til then i need to arm myself with all the pros and cons especially the repeat nissen rather than disassociation. thanks les > > Lesley, > Is it even safe for her to go through a second nissen at this point? It's > still a fairly invasive, complicated procedure as you know from before. > You'll have to weigh all the pros & cons with the docs treating her right > now for the other stuff (lungs, etc) to see if she would fair well enough to > take that surgery. > -- > Weir > kawfolks@... > http://ca.geocities.com/weirfamily@... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 No its not safe and this is why we are so hesitant,but they have said as soon as she is well we must have a answer as to what we are doing, because she gets sick so quickly there is very little time between each admission. I need to gather all nissen pros and cons, and in the meantime, hope someone finds some bizzar allergy which accounts for all this and saves any kind of surgery, but i think this is dreaming material and highly unlikely. The good news for us is that the ICU consultany has now got involved as well, mind you they are probably sick of seeing her in there bed blocking!!! lesx > > Lesley, > Is it even safe for her to go through a second nissen at this point? It's > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2006 Report Share Posted March 20, 2006 Lesley- We have no Nissen experience, but we do have experience with asking questions and getting drs together to make these huge decisions. You are doing such a great job of asking all the right questions and getting the drs to listen and ask their own questions. I have no doubt that the team will find a good plan for Amelie. Sending you all patience, strength, and wisdom... Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 Lesley, In our experience, the nissen was so positive that I have nothing but great things to say about it. It was awful for the little boy I worked with when his 1st failed, so I can understand the fear of going through it again as his mom did but she took the chance and now it's working very well. > > > > No its not safe and this is why we are so hesitant,but they have said > as soon as she is well we must have a answer as to what we are doing, > because she gets sick so quickly there is very little time between > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 with me never worked but then you cant take chances but i really dotn think shes just right yet glad shes stable though love you heaps xxx > > Lesley, > In our experience, the nissen was so positive that I have nothing but > great > things to say about it. It was awful for the little boy I worked with > when > his 1st failed, so I can understand the fear of going through it again as > his mom did but she took the chance and now it's working very well. > > > > > > > > > > > > No its not safe and this is why we are so hesitant,but they have said > > as soon as she is well we must have a answer as to what we are doing, > > because she gets sick so quickly there is very little time between > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 Lesley, Dylan's had his first Nissen at 7 weeks. It lasted approx 1 year, 9 months of misery after it slipped (no pneumonias). His usual happy, healthful self after Nissen repeated around age 2. He is almost 10 and is still doing great with it. I hope you and the team can come to the RIGHT answer for AMELIE! Kim > AMELIE STABLE NO PLANS TO EXTUBATE, SHE IS NOT READY, NOW IN 50% > OXYGEN AND SATS LOW 90'S > > Long day Monday everyone back from the weekend, seen just about every > team Amelie has today. > Dont think between us we know what to do for the best. > > I will do this in stages then please help....!! > > Intensive Care Consultant, asked about the 14 months as dont forget > this hospital has only known Amelie since christmas, gave him the > story about once the Fundo was done in May last year we had four > wonderful months, without reflux, and he was also interested that > three out of four children have lactose intolerance and food > allergies, he said we are right to rule other issues out, and he has > agreed to send samples off for all sorts of allergies, and to wait for > biopsy results, but he said it looked like the nissen had done the > trick initially, which could conclusively rule out any other > underlying issues, because if she had a TOF or fistula or > uncoordinated swallow, she would still have had pneumonias in the four > months when she had nothing! > He also said that when Amelie had her nissen done, she was tiny and > frail 3Kg and these are very difficult to do when so little, 10% fail, > and it would be easier to do this procedure now she was bigger, and > maybe with better results. > > Respiratory: There priority is the lung situation which isnt good, THE > LEFT LOWER LOBE HAS COLLAPSED,they said which ever way we look at it > we are headed down the surgical root they agree that she is not well > enough at present for disassociation, and that if they had to fall off > the fence, they would choose repeat nissen, in light of this latest > upset with GA and lungs. > > We have spoken to Amelies Paed doctor Lydia, who has had Amelie since > birth, she was against the disassociation from the ofset, and has > agreed to come to an appointment with everyone if we can get this > organised, problem is everyone has holidays coming up. > > QUESTIONS TO THE EXPERTS ON OUR LISTSERV PLEASE: > > 1 SHOULD WE RISK A REPEAT NISSEN?? > > 2 CAN ANYONE WHO HAS HAD A REPEAT NISSEN AND IT HAS BEEN A SUCCESS, > TELL ME HOW LONG THE SECOND ONE HAS LASTED from the first one?? > > 3 HAS ANYONE NEEDED A THIRD ONE DOING?? > > > ANY OTHER INPUT WOULD BE GREATLY APPRECIATED, AND THANK YOU TO ALL THE > PRIVATE E-MAILS AS WELL WE ARE SO VERY GLAD YOU ARE ALL HERE > > > LOVE LES > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group 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 web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 Lesley, Dylan's had his first Nissen at 7 weeks. It lasted approx 1 year, 9 months of misery after it slipped (no pneumonias). His usual happy, healthful self after Nissen repeated around age 2. He is almost 10 and is still doing great with it. I hope you and the team can come to the RIGHT answer for AMELIE! Kim > AMELIE STABLE NO PLANS TO EXTUBATE, SHE IS NOT READY, NOW IN 50% > OXYGEN AND SATS LOW 90'S > > Long day Monday everyone back from the weekend, seen just about every > team Amelie has today. > Dont think between us we know what to do for the best. > > I will do this in stages then please help....!! > > Intensive Care Consultant, asked about the 14 months as dont forget > this hospital has only known Amelie since christmas, gave him the > story about once the Fundo was done in May last year we had four > wonderful months, without reflux, and he was also interested that > three out of four children have lactose intolerance and food > allergies, he said we are right to rule other issues out, and he has > agreed to send samples off for all sorts of allergies, and to wait for > biopsy results, but he said it looked like the nissen had done the > trick initially, which could conclusively rule out any other > underlying issues, because if she had a TOF or fistula or > uncoordinated swallow, she would still have had pneumonias in the four > months when she had nothing! > He also said that when Amelie had her nissen done, she was tiny and > frail 3Kg and these are very difficult to do when so little, 10% fail, > and it would be easier to do this procedure now she was bigger, and > maybe with better results. > > Respiratory: There priority is the lung situation which isnt good, THE > LEFT LOWER LOBE HAS COLLAPSED,they said which ever way we look at it > we are headed down the surgical root they agree that she is not well > enough at present for disassociation, and that if they had to fall off > the fence, they would choose repeat nissen, in light of this latest > upset with GA and lungs. > > We have spoken to Amelies Paed doctor Lydia, who has had Amelie since > birth, she was against the disassociation from the ofset, and has > agreed to come to an appointment with everyone if we can get this > organised, problem is everyone has holidays coming up. > > QUESTIONS TO THE EXPERTS ON OUR LISTSERV PLEASE: > > 1 SHOULD WE RISK A REPEAT NISSEN?? > > 2 CAN ANYONE WHO HAS HAD A REPEAT NISSEN AND IT HAS BEEN A SUCCESS, > TELL ME HOW LONG THE SECOND ONE HAS LASTED from the first one?? > > 3 HAS ANYONE NEEDED A THIRD ONE DOING?? > > > ANY OTHER INPUT WOULD BE GREATLY APPRECIATED, AND THANK YOU TO ALL THE > PRIVATE E-MAILS AS WELL WE ARE SO VERY GLAD YOU ARE ALL HERE > > > LOVE LES > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group 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 web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 Lesley, Dylan's had his first Nissen at 7 weeks. It lasted approx 1 year, 9 months of misery after it slipped (no pneumonias). His usual happy, healthful self after Nissen repeated around age 2. He is almost 10 and is still doing great with it. I hope you and the team can come to the RIGHT answer for AMELIE! Kim > AMELIE STABLE NO PLANS TO EXTUBATE, SHE IS NOT READY, NOW IN 50% > OXYGEN AND SATS LOW 90'S > > Long day Monday everyone back from the weekend, seen just about every > team Amelie has today. > Dont think between us we know what to do for the best. > > I will do this in stages then please help....!! > > Intensive Care Consultant, asked about the 14 months as dont forget > this hospital has only known Amelie since christmas, gave him the > story about once the Fundo was done in May last year we had four > wonderful months, without reflux, and he was also interested that > three out of four children have lactose intolerance and food > allergies, he said we are right to rule other issues out, and he has > agreed to send samples off for all sorts of allergies, and to wait for > biopsy results, but he said it looked like the nissen had done the > trick initially, which could conclusively rule out any other > underlying issues, because if she had a TOF or fistula or > uncoordinated swallow, she would still have had pneumonias in the four > months when she had nothing! > He also said that when Amelie had her nissen done, she was tiny and > frail 3Kg and these are very difficult to do when so little, 10% fail, > and it would be easier to do this procedure now she was bigger, and > maybe with better results. > > Respiratory: There priority is the lung situation which isnt good, THE > LEFT LOWER LOBE HAS COLLAPSED,they said which ever way we look at it > we are headed down the surgical root they agree that she is not well > enough at present for disassociation, and that if they had to fall off > the fence, they would choose repeat nissen, in light of this latest > upset with GA and lungs. > > We have spoken to Amelies Paed doctor Lydia, who has had Amelie since > birth, she was against the disassociation from the ofset, and has > agreed to come to an appointment with everyone if we can get this > organised, problem is everyone has holidays coming up. > > QUESTIONS TO THE EXPERTS ON OUR LISTSERV PLEASE: > > 1 SHOULD WE RISK A REPEAT NISSEN?? > > 2 CAN ANYONE WHO HAS HAD A REPEAT NISSEN AND IT HAS BEEN A SUCCESS, > TELL ME HOW LONG THE SECOND ONE HAS LASTED from the first one?? > > 3 HAS ANYONE NEEDED A THIRD ONE DOING?? > > > ANY OTHER INPUT WOULD BE GREATLY APPRECIATED, AND THANK YOU TO ALL THE > PRIVATE E-MAILS AS WELL WE ARE SO VERY GLAD YOU ARE ALL HERE > > > LOVE LES > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group 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 web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
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