Guest guest Posted June 25, 2001 Report Share Posted June 25, 2001 Winnie, We just went through opening number 5 with our 3.5 yr old, Kennedy. She has bilateral bony c. atresia repaired through her palate at 8 weeks, with stents in afterwards for 6 weeks. She has had four lasers since then to re-open the choanae. You're not alone, and there's others out there who've had many more operations than this to open those dang noses!!!! If they could just find something to do to repair it permanently and STOP that nose from running, I think I'd pay a million dollars!!! Mom to Kennedy 3yr old CHARGEr, 11, 10, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 chaonal atresia help Hi we have an eleven month old son who was born with choanal atresia,he had stents put in his nose at three days old he had them in for four months. All up he has had five operations,both his nasal passages were covered with bone and tissue,his last op was in febuary this year he seems to be doing well at this time. What im hoping to find out is there any other people around with this condition,we live in Australia and only know of one other case,we have been looking on here for a long time trying to find people who can relate in some way what we are going through with this condition. thank winnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2001 Report Share Posted June 26, 2001 Winnie, My granddaughter, Jourdan, has had one surgery for chaonal atresia already and there is evidence that the passages are closing again. Jourdan had heart surgery at two weeks old and the nasal surgery about two weeks after that. I think the nasal surgery was worse! She was just so uncomfortable with the stints and suctioning. I hated it!!! I just wish there was something they could do to keep the passages open without putting her through that again. We got some bad news last night. My daughter-in-law, Kelley, had to bring Jourdan to the hospital. She got some blood when she suctioned her throat and Jourdan seemed to be breathing harder. It seems she may be coming down with pneumonia and is back in PICU. Everything seemed to be going so well. This is very disappointing and discouraging for us all. Lynn (grandmother of Jourdan-CHARGE 3 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 Lynn, Send my love to Jourdan. I hope she will be okay and get over the pneumonia. It seems rough now, but hopefully after the first year, things will get easier. I know that seems like a lifetime away, but it will be here before you know it. Foley Mom to 5, (CHARGEr in heaven) and Jillian 3 cHaRGE Re: chaonal atresia help Winnie, My granddaughter, Jourdan, has had one surgery for chaonal atresia already and there is evidence that the passages are closing again. Jourdan had heart surgery at two weeks old and the nasal surgery about two weeks after that. I think the nasal surgery was worse! She was just so uncomfortable with the stints and suctioning. I hated it!!! I just wish there was something they could do to keep the passages open without putting her through that again. We got some bad news last night. My daughter-in-law, Kelley, had to bring Jourdan to the hospital. She got some blood when she suctioned her throat and Jourdan seemed to be breathing harder. It seems she may be coming down with pneumonia and is back in PICU. Everything seemed to be going so well. This is very disappointing and discouraging for us all. Lynn (grandmother of Jourdan-CHARGE 3 months) 5th International CHARGE Syndrome Conference, Indianapolis, Indiana,July20-22, 2001. Information is available at our websitewww.chargesyndrome.org or by calling 1-.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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 Lynn, Please send Jourdan our love, pneumonia is so hard on these little guys.... It is very difficult to go through when they are hospitalized so quickly after you get out of the hospital from the first long stay... Mom to Kennedy 3yr old CHARGEr, 11, 10, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476 Re: chaonal atresia help Winnie, My granddaughter, Jourdan, has had one surgery for chaonal atresia already and there is evidence that the passages are closing again. Jourdan had heart surgery at two weeks old and the nasal surgery about two weeks after that. I think the nasal surgery was worse! She was just so uncomfortable with the stints and suctioning. I hated it!!! I just wish there was something they could do to keep the passages open without putting her through that again. We got some bad news last night. My daughter-in-law, Kelley, had to bring Jourdan to the hospital. She got some blood when she suctioned her throat and Jourdan seemed to be breathing harder. It seems she may be coming down with pneumonia and is back in PICU. Everything seemed to be going so well. This is very disappointing and discouraging for us all. Lynn (grandmother of Jourdan-CHARGE 3 months) 5th International CHARGE Syndrome Conference, Indianapolis, Indiana,July20-22, 2001. Information is available at our websitewww.chargesyndrome.org or by calling 1-.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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2001 Report Share Posted June 30, 2001 My son had this done three times, where they kept removing the stints with in a few weeks. We did some research and found a doctor in New York city. This doctor performed repair on my son once and he left the stints in for 8 long months. However, he has not needed any further re-opening to his nose since the stints were removed. I hated suctioning him but, you have to do it. I think he will always have some problem with his nose, hey his genes said to close the passage in his nose, his genes have not changed we just forced them opened. He had this final procedure done when he was a few months old now he is 4 yrs. old and so far so good!!! Talk to your doctors and ask why they are taking the stints out so soon. You don't take a band aid off until the cut heals. Leave the stints in until the nose can heal over and the bony tissue won't be able to grow back. Good luck and always pray, Bill Matasker, Dad to chaonal atresia help Hi we have an eleven month old son who was born with choanal atresia,he had stents put in his nose at three days old he had them in for four months. All up he has had five operations,both his nasal passages were covered with bone and tissue,his last op was in febuary this year he seems to be doing well at this time. What im hoping to find out is there any other people around with this condition,we live in Australia and only know of one other case,we have been looking on here for a long time trying to find people who can relate in some way what we are going through with this condition. thank winnie 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July 20-22, 2001. Information is available at our website www.chargesyndrome.org or by calling 1-. 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 Quote Link to comment Share on other sites More sharing options...
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