Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 was trached for 3 reasons: subglotic stenosis, paralyzed left vocal cord, and lyringia malasia. He was trached at 1 month and was decannulated at about 4. (we had two prior unsuccessful attempts) We were told he would be trached for 2-3 years and were so disappointed when they were unable to decannulate him the first two times (I think just freaked!!) but I really kept pushing and pushing the docs to keep trying...so much that I fired his ENT and found a more aggressive one. Nicol At 03:38 PM 10/21/2004 +0000, you wrote: >Wow other kids with Trach's I don't get to see that a lot. If anyon >e is willing to share with me the prognosis of why their kid was >trached and what they were told about how long it would be. Josh >was trached at 5 days old and we were told he would probably have it >until he was 2, that has come and gone, then the feeling was he >would never get rid of it and now we just aren't sure. What are >doctors telling you all!! I feel lost sometimes. > >Bernie, Mom of , 5 year old cHARGEr > > > > > > >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 >7th International >CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. >Information will be available at our website >www.chargesyndrome.org or by calling 1-. In Canada, you may >contact CHARGE Syndrome Canada at 1- (families), visit >www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2004 Report Share Posted October 22, 2004 Bernie, Our is now 20. At 6mo. she was trached. She developed subglottic stenosis. Some one else had a child with the same thing but the name escapes me. She had many many bronchoscopies to " stretch " the treachea. She was decanulated when she was almost 4yrs old. By the time she was 2 she was ducking her chin to block the air so she could make noise.( back then they had not developed the filters and covers they have now) We called it " beautiful music " . Anyway, as per doctors orders ( don't try it without a doctors orders) we blocked her tach more and more at age 3 while she was awake. By 3 1/2 we blocked at at night if she wasn't congested. She was on an apnea monitor when alseep until the trach came out. She had sleep apnea problems as an infant. Her stoma was surgicaly closed before she was 5. She did develop coupe and got lots of upper respiratory infections and had pneumonia 4 times. The croupe lasted until a couple of years ago. We had a home aerosole machine. She still uses it at least once a winter. She will always catch upper respiratory stuff. Hope this helps. It is one story of many on this list. Lynn Trach's Wow other kids with Trach's I don't get to see that a lot. If anyon e is willing to share with me the prognosis of why their kid was trached and what they were told about how long it would be. Josh was trached at 5 days old and we were told he would probably have it until he was 2, that has come and gone, then the feeling was he would never get rid of it and now we just aren't sure. What are doctors telling you all!! I feel lost sometimes. Bernie, Mom of , 5 year old cHARGEr 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 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2004 Report Share Posted October 22, 2004 What did they do to correct his issues or was it just growth that helped? Josh has tracheal malasia and we thought his vocal chords were paralized, but he vocalizes. I am wondering if our Pulmonoligist isn't aggressive enough. Sometimes I think she figures he isn't worth the trouble. Nicol Freeman wrote: was trached for 3 reasons: subglotic stenosis, paralyzed left vocal cord, and lyringia malasia. He was trached at 1 month and was decannulated at about 4. (we had two prior unsuccessful attempts) We were told he would be trached for 2-3 years and were so disappointed when they were unable to decannulate him the first two times (I think just freaked!!) but I really kept pushing and pushing the docs to keep trying...so much that I fired his ENT and found a more aggressive one. Nicol At 03:38 PM 10/21/2004 +0000, you wrote: >Wow other kids with Trach's I don't get to see that a lot. If anyon >e is willing to share with me the prognosis of why their kid was >trached and what they were told about how long it would be. Josh >was trached at 5 days old and we were told he would probably have it >until he was 2, that has come and gone, then the feeling was he >would never get rid of it and now we just aren't sure. What are >doctors telling you all!! I feel lost sometimes. > >Bernie, Mom of , 5 year old cHARGEr > > > > > > >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 >7th International >CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. >Information will be available at our website >www.chargesyndrome.org or by calling 1-. In Canada, you may >contact CHARGE Syndrome Canada at 1- (families), visit >www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
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