Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 Bradley, it seems like you have seen the sun rising after a long dark night with all these issues being sorted out, as you wrote< We thought this day would never come> and Aubrey is fine after her decannulation, loved the idea of Pooh Bear, it must have made things easier for Aubrey. Another issue being< One of the tests that we had during the pregnancy (triple screen) told us that she was high risk for Down's Syndrome, so we were very worried about that and charge> cannot imagine what you must have gone through with all this stress, and then what a relief it must have been for you. After both these positive results you must have realised that, there is always light at the end of the tunnel, and by posting your experiences you have definitely given all of us a lot of hopefor the future of our children, jsut as you said<. because I hope it can give others hope when they feel like things will never get better>. Loves Pushpa grandma to Aman 7 months and at home. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 Bradley, it seems like you have seen the sun rising after a long dark night with all these issues being sorted out, as you wrote< We thought this day would never come> and Aubrey is fine after her decannulation, loved the idea of Pooh Bear, it must have made things easier for Aubrey. Another issue being< One of the tests that we had during the pregnancy (triple screen) told us that she was high risk for Down's Syndrome, so we were very worried about that and charge> cannot imagine what you must have gone through with all this stress, and then what a relief it must have been for you. After both these positive results you must have realised that, there is always light at the end of the tunnel, and by posting your experiences you have definitely given all of us a lot of hopefor the future of our children, jsut as you said<. because I hope it can give others hope when they feel like things will never get better>. Loves Pushpa grandma to Aman 7 months and at home. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 Congratulations to and for Aubrey! It all sounds fantastic. I do have a question though. Actually a couple. They just took it out by tugging it. If it was that easy how did it stay in so well in the first place? Now that they took it out what happens to the opening? Don't they have to close it up? They just put a Band-Aid on it, just like that? She breathes absolutely on her own now? How exciting. Congratulations to everyone! Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 Hi Bonnie. Thank you. The trach stayed in by using a trach tie that fastened around her neck. The ties we used had velcro like fasteners on them. Every couple of weeks we had to change the trach, so we would take it out ourselves and put a clean one in. It is a pretty simple process. Yes, the doctor just undid her trach tie and slid the trach out and that was it. Her oxygen sats were 100% and she didn't even flinch. As for the opening (stoma), it probably will not close on its own since she had the trach for over 3 years. We will just use a bandaid over it to keep it closed for now and if it has not closed on its own by the end of the summer, we will go back in and the doctor will close it. She had been breathing thru her mouth and nose since last July by capping off the trach all day long. We had not done it at night because the doctors told us not to. So for Aubrey, she was already breathing thru her mouth anyway and that is why it was such an easy decannulation, I think. I can't even begin to tell you how our lives have already changed - it is great! Bradley Re: Some good news Congratulations to and for Aubrey! It all sounds fantastic. I do have a question though. Actually a couple. They just took it out by tugging it. If it was that easy how did it stay in so well in the first place? Now that they took it out what happens to the opening? Don't they have to close it up? They just put a Band-Aid on it, just like that? She breathes absolutely on her own now? How exciting. Congratulations to everyone! Bonnie 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 May 28, 2002 Report Share Posted May 28, 2002 Hi Bonnie. Thank you. The trach stayed in by using a trach tie that fastened around her neck. The ties we used had velcro like fasteners on them. Every couple of weeks we had to change the trach, so we would take it out ourselves and put a clean one in. It is a pretty simple process. Yes, the doctor just undid her trach tie and slid the trach out and that was it. Her oxygen sats were 100% and she didn't even flinch. As for the opening (stoma), it probably will not close on its own since she had the trach for over 3 years. We will just use a bandaid over it to keep it closed for now and if it has not closed on its own by the end of the summer, we will go back in and the doctor will close it. She had been breathing thru her mouth and nose since last July by capping off the trach all day long. We had not done it at night because the doctors told us not to. So for Aubrey, she was already breathing thru her mouth anyway and that is why it was such an easy decannulation, I think. I can't even begin to tell you how our lives have already changed - it is great! Bradley Re: Some good news Congratulations to and for Aubrey! It all sounds fantastic. I do have a question though. Actually a couple. They just took it out by tugging it. If it was that easy how did it stay in so well in the first place? Now that they took it out what happens to the opening? Don't they have to close it up? They just put a Band-Aid on it, just like that? She breathes absolutely on her own now? How exciting. Congratulations to everyone! Bonnie 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 May 28, 2002 Report Share Posted May 28, 2002 Hi Bonnie. Thank you. The trach stayed in by using a trach tie that fastened around her neck. The ties we used had velcro like fasteners on them. Every couple of weeks we had to change the trach, so we would take it out ourselves and put a clean one in. It is a pretty simple process. Yes, the doctor just undid her trach tie and slid the trach out and that was it. Her oxygen sats were 100% and she didn't even flinch. As for the opening (stoma), it probably will not close on its own since she had the trach for over 3 years. We will just use a bandaid over it to keep it closed for now and if it has not closed on its own by the end of the summer, we will go back in and the doctor will close it. She had been breathing thru her mouth and nose since last July by capping off the trach all day long. We had not done it at night because the doctors told us not to. So for Aubrey, she was already breathing thru her mouth anyway and that is why it was such an easy decannulation, I think. I can't even begin to tell you how our lives have already changed - it is great! Bradley Re: Some good news Congratulations to and for Aubrey! It all sounds fantastic. I do have a question though. Actually a couple. They just took it out by tugging it. If it was that easy how did it stay in so well in the first place? Now that they took it out what happens to the opening? Don't they have to close it up? They just put a Band-Aid on it, just like that? She breathes absolutely on her own now? How exciting. Congratulations to everyone! Bonnie 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 May 28, 2002 Report Share Posted May 28, 2002 Yes, I think that things are finally turning around for us and I hope others get to experience the same! Bradley Re: Some good news Bradley, it seems like you have seen the sun rising after a long dark night with all these issues being sorted out, as you wrote< We thought this day would never come> and Aubrey is fine after her decannulation, loved the idea of Pooh Bear, it must have made things easier for Aubrey. Another issue being< One of the tests that we had during the pregnancy (triple screen) told us that she was high risk for Down's Syndrome, so we were very worried about that and charge> cannot imagine what you must have gone through with all this stress, and then what a relief it must have been for you. After both these positive results you must have realised that, there is always light at the end of the tunnel, and by posting your experiences you have definitely given all of us a lot of hopefor the future of our children, jsut as you said<. because I hope it can give others hope when they feel like things will never get better>. Loves Pushpa grandma to Aman 7 months and at home. 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 May 28, 2002 Report Share Posted May 28, 2002 Yes, I think that things are finally turning around for us and I hope others get to experience the same! Bradley Re: Some good news Bradley, it seems like you have seen the sun rising after a long dark night with all these issues being sorted out, as you wrote< We thought this day would never come> and Aubrey is fine after her decannulation, loved the idea of Pooh Bear, it must have made things easier for Aubrey. Another issue being< One of the tests that we had during the pregnancy (triple screen) told us that she was high risk for Down's Syndrome, so we were very worried about that and charge> cannot imagine what you must have gone through with all this stress, and then what a relief it must have been for you. After both these positive results you must have realised that, there is always light at the end of the tunnel, and by posting your experiences you have definitely given all of us a lot of hopefor the future of our children, jsut as you said<. because I hope it can give others hope when they feel like things will never get better>. Loves Pushpa grandma to Aman 7 months and at home. 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 May 28, 2002 Report Share Posted May 28, 2002 Yes, I think that things are finally turning around for us and I hope others get to experience the same! Bradley Re: Some good news Bradley, it seems like you have seen the sun rising after a long dark night with all these issues being sorted out, as you wrote< We thought this day would never come> and Aubrey is fine after her decannulation, loved the idea of Pooh Bear, it must have made things easier for Aubrey. Another issue being< One of the tests that we had during the pregnancy (triple screen) told us that she was high risk for Down's Syndrome, so we were very worried about that and charge> cannot imagine what you must have gone through with all this stress, and then what a relief it must have been for you. After both these positive results you must have realised that, there is always light at the end of the tunnel, and by posting your experiences you have definitely given all of us a lot of hopefor the future of our children, jsut as you said<. because I hope it can give others hope when they feel like things will never get better>. Loves Pushpa grandma to Aman 7 months and at home. 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 May 28, 2002 Report Share Posted May 28, 2002 Yea, we were just trying to think of anything that could help alleviate any fear she might have with taking the trach out. Every once in awhile, she asks where her trach is and I tell her we threw it in the trash because she doesn't need it anymore (of course we didn't really). She likes it when we tell her she is just like mommy, daddy, Ian, and now because she breathes thru her mouth and nose - every once in awhile, she will say " I'm just like you now " .... Bradley Re: Some good news I can't even imagine how happy ( & probably weird) you must have felt... I saved the story about the doctor decannulating Pooh bear, that's too good... ~ Weir Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Re: Some good news > Bradley wrote: > > Recently we have had a few good things happen that I want to share with > everyone. Yesterday, our daughter Aubrey (3 1/2 years old with charge) was > successfully decannulated! She had the trach put in when she was 3 months > old. So far things are going well. We thought this day would never come! > > What great news! We've been there! And about the same time frame for > too (3 months to 3 years trached)! You're right - you think it will > never come, then it does and - WOW! You might see a noted change in > independence with Aubrey - at least we did with . It was like > freeing her because she'd also been restricted with CPAP tubing and oxygen. > > > > > We also had a baby girl, , about 2 1/2 months ago. She was born > completely healthy. One of the tests that we had during the pregnancy > (triple screen) told us that she was high risk for Down's Syndrome, so we > were very worried about that and charge. > > Congratulations! I'm so glad is healthy. Having that worry during > the pregnancy had to be a bit " stressful " , to say the least. > > > > > I'm posting this because I hope it can give others hope when they feel > like things will never get better. We were there and although we still have > other charge issues with Aubrey, things are much, much better now! > > You will find you won't know what to do with all the time you have free from > suctioning and trach care! Actually, you'll probably now have a hard time > keeping track of Aubrey. When Krisitn was trached she sounded so noisy, and > when it was out I got nervous about where she was because I couldn't hear > her! But what a wonderful adjustment to need to make! > > Congratulations again, on both counts. > Friends in CHARGE, > Marilyn Ogan > Mom of Ken (12, ADD) and (9, CHARGE+) > Wife of Rick > > > > 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 May 28, 2002 Report Share Posted May 28, 2002 Yea, we were just trying to think of anything that could help alleviate any fear she might have with taking the trach out. Every once in awhile, she asks where her trach is and I tell her we threw it in the trash because she doesn't need it anymore (of course we didn't really). She likes it when we tell her she is just like mommy, daddy, Ian, and now because she breathes thru her mouth and nose - every once in awhile, she will say " I'm just like you now " .... Bradley Re: Some good news I can't even imagine how happy ( & probably weird) you must have felt... I saved the story about the doctor decannulating Pooh bear, that's too good... ~ Weir Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Re: Some good news > Bradley wrote: > > Recently we have had a few good things happen that I want to share with > everyone. Yesterday, our daughter Aubrey (3 1/2 years old with charge) was > successfully decannulated! She had the trach put in when she was 3 months > old. So far things are going well. We thought this day would never come! > > What great news! We've been there! And about the same time frame for > too (3 months to 3 years trached)! You're right - you think it will > never come, then it does and - WOW! You might see a noted change in > independence with Aubrey - at least we did with . It was like > freeing her because she'd also been restricted with CPAP tubing and oxygen. > > > > > We also had a baby girl, , about 2 1/2 months ago. She was born > completely healthy. One of the tests that we had during the pregnancy > (triple screen) told us that she was high risk for Down's Syndrome, so we > were very worried about that and charge. > > Congratulations! I'm so glad is healthy. Having that worry during > the pregnancy had to be a bit " stressful " , to say the least. > > > > > I'm posting this because I hope it can give others hope when they feel > like things will never get better. We were there and although we still have > other charge issues with Aubrey, things are much, much better now! > > You will find you won't know what to do with all the time you have free from > suctioning and trach care! Actually, you'll probably now have a hard time > keeping track of Aubrey. When Krisitn was trached she sounded so noisy, and > when it was out I got nervous about where she was because I couldn't hear > her! But what a wonderful adjustment to need to make! > > Congratulations again, on both counts. > Friends in CHARGE, > Marilyn Ogan > Mom of Ken (12, ADD) and (9, CHARGE+) > Wife of Rick > > > > 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 May 28, 2002 Report Share Posted May 28, 2002 Yea, we were just trying to think of anything that could help alleviate any fear she might have with taking the trach out. Every once in awhile, she asks where her trach is and I tell her we threw it in the trash because she doesn't need it anymore (of course we didn't really). She likes it when we tell her she is just like mommy, daddy, Ian, and now because she breathes thru her mouth and nose - every once in awhile, she will say " I'm just like you now " .... Bradley Re: Some good news I can't even imagine how happy ( & probably weird) you must have felt... I saved the story about the doctor decannulating Pooh bear, that's too good... ~ Weir Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Re: Some good news > Bradley wrote: > > Recently we have had a few good things happen that I want to share with > everyone. Yesterday, our daughter Aubrey (3 1/2 years old with charge) was > successfully decannulated! She had the trach put in when she was 3 months > old. So far things are going well. We thought this day would never come! > > What great news! We've been there! And about the same time frame for > too (3 months to 3 years trached)! You're right - you think it will > never come, then it does and - WOW! You might see a noted change in > independence with Aubrey - at least we did with . It was like > freeing her because she'd also been restricted with CPAP tubing and oxygen. > > > > > We also had a baby girl, , about 2 1/2 months ago. She was born > completely healthy. One of the tests that we had during the pregnancy > (triple screen) told us that she was high risk for Down's Syndrome, so we > were very worried about that and charge. > > Congratulations! I'm so glad is healthy. Having that worry during > the pregnancy had to be a bit " stressful " , to say the least. > > > > > I'm posting this because I hope it can give others hope when they feel > like things will never get better. We were there and although we still have > other charge issues with Aubrey, things are much, much better now! > > You will find you won't know what to do with all the time you have free from > suctioning and trach care! Actually, you'll probably now have a hard time > keeping track of Aubrey. When Krisitn was trached she sounded so noisy, and > when it was out I got nervous about where she was because I couldn't hear > her! But what a wonderful adjustment to need to make! > > Congratulations again, on both counts. > Friends in CHARGE, > Marilyn Ogan > Mom of Ken (12, ADD) and (9, CHARGE+) > Wife of Rick > > > > 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 May 28, 2002 Report Share Posted May 28, 2002 Thank you, Gunilla. When Aubrey first got her trach, it was also a huge relief for us to see her not struggle so horribly to breathe. Although we are so glad it is gone now, at that time, it definitely made her life much better. Bradley SV: Some good news Congratulations both for Aubreys decannulation and your new familymember. Best wishes from Gunilla, mother to 2 years and 3 months CHaRgE PS. got a trach 3 months ago I will tell you all when I have the energy it was a horrifying surgery. is all well now. For the first time in her life she is breathing and sleeping safely. Some good news > Recently we have had a few good things happen that I want to share > with everyone. Yesterday, our daughter Aubrey (3 1/2 years old with > charge) was successfully decannulated! She had the trach put in when > she was 3 months old. So far things are going well. We thought this > day would never come! > > We also had a baby girl, , about 2 1/2 months ago. She was born > completely healthy. One of the tests that we had during the pregnancy > (triple screen) told us that she was high risk for Down's Syndrome, so > we were very worried about that and charge. > > I'm posting this because I hope it can give others hope when they feel > like things will never get better. We were there and although we > still have other charge issues with Aubrey, things are much, much > better now! > > Bradley > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 Thank you, Gunilla. When Aubrey first got her trach, it was also a huge relief for us to see her not struggle so horribly to breathe. Although we are so glad it is gone now, at that time, it definitely made her life much better. Bradley SV: Some good news Congratulations both for Aubreys decannulation and your new familymember. Best wishes from Gunilla, mother to 2 years and 3 months CHaRgE PS. got a trach 3 months ago I will tell you all when I have the energy it was a horrifying surgery. is all well now. For the first time in her life she is breathing and sleeping safely. Some good news > Recently we have had a few good things happen that I want to share > with everyone. Yesterday, our daughter Aubrey (3 1/2 years old with > charge) was successfully decannulated! She had the trach put in when > she was 3 months old. So far things are going well. We thought this > day would never come! > > We also had a baby girl, , about 2 1/2 months ago. She was born > completely healthy. One of the tests that we had during the pregnancy > (triple screen) told us that she was high risk for Down's Syndrome, so > we were very worried about that and charge. > > I'm posting this because I hope it can give others hope when they feel > like things will never get better. We were there and although we > still have other charge issues with Aubrey, things are much, much > better now! > > Bradley > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 Thank you, Gunilla. When Aubrey first got her trach, it was also a huge relief for us to see her not struggle so horribly to breathe. Although we are so glad it is gone now, at that time, it definitely made her life much better. Bradley SV: Some good news Congratulations both for Aubreys decannulation and your new familymember. Best wishes from Gunilla, mother to 2 years and 3 months CHaRgE PS. got a trach 3 months ago I will tell you all when I have the energy it was a horrifying surgery. is all well now. For the first time in her life she is breathing and sleeping safely. Some good news > Recently we have had a few good things happen that I want to share > with everyone. Yesterday, our daughter Aubrey (3 1/2 years old with > charge) was successfully decannulated! She had the trach put in when > she was 3 months old. So far things are going well. We thought this > day would never come! > > We also had a baby girl, , about 2 1/2 months ago. She was born > completely healthy. One of the tests that we had during the pregnancy > (triple screen) told us that she was high risk for Down's Syndrome, so > we were very worried about that and charge. > > I'm posting this because I hope it can give others hope when they feel > like things will never get better. We were there and although we > still have other charge issues with Aubrey, things are much, much > better now! > > Bradley > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 I am so jealous ............. 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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