How long has trach been in?

[Michael's mom]

Please post how long you or your child has had a trach and when or if you think decannulation (trach removal) will happen. Â*If you want to, post your diagnosis, that way it will give others an idea of what to expect. Â*Thanks! Â*Sue

[Michael's mom]

My son is 11 months old, trached at 26 days, decan undetermined. He has tracheomalacia, broncheomalacia, hypotonia. He also has a big giant smile, a fat belly, and is wonderful to hug. Sue

[Ardyth Geldart]

Hi Sue,
Shealee was trached January 14/00, at 4 mnths. Decannulation from what I'm told is expected when she is around 16yrs old.They say the only other person they know of with her tracheal problems was trached until she was 16, so I am to expect the same. Ardyth

[Skye's Mom]

My son, Skye, born 2/21/00 was trached day 5 secondary to vocal cord paralysis. Has had vocal cord lateralization at age one but still could not decannulate. We're returning to Cincinnati late April for sleep study and laryngoscopy for re-eval. He is capped all day but stridors when asleep. He's happy, healthy and a talker!!! http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/smile.gif

[cariaad]

HI Allie was trached at 4 months due to subglottic stenosis (caused by extubating herself so often). We have an appointment in MAy hoping to decanulate. Deb

[Jimmysmom]

Hi

Jimmy was trached and put on a ventilator at six months due to his right diaphragm becoming paralyzed. At this time he was diagnosed with Guillian Barre Syndrome. This syndrome affects the myline on the nerves. He has little movement in the muscles below the knee and below the elbow though he is able to use his hands to play with toys. It also affected his trunk muscles so he is unable to sit independently. Doctors are not sure of prognosis so we just keep plugging along and hope for the best. We have been able to continue to wean his pressure support down, so maybe hopefully as he gets bigger his breathing may improve.

Anne

[Cheryl B]

My daughter was trached at 5 weeks and decanulates at 3 1/2 years. http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/biggrin.gif

[Erin (Sara's Mom)]

Sara was trached at 11 days due to congenital subglottic stenosis, laryngeal web and tracheomalacia. Â*She was trached after a failed reconstruction at 4 days old. Â*She also has GERD, and we are hoping Â*http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/confused.gif she is ready for her LTP this summer. Â*She is currently 17 months old and weighs 15lbs 8 oz.

[Luke's parents]

Luke was trached at 1 month for tracheomalacia from neurological problems that happened at birth. If he can take his feedings by mouth he should be able to get the trach out. He has taken great strides towards this but not close yet.

[Heather Trotter]

Hello, My daughter Morgan was trached at 4 months of age. We were told after a TEF at birth and apnea's that at one month of age she had tracheamalacia and laryngomalacia but, the tracheamalacia was not that bad. It wasn't until she was 4 months old and many cynotic and apnea's (they thought was from her having severe reflux) that they found that in fact her malacia was severe with 9/10 collapsing. She had a emergency trach put in on March 16, 2001. Her malacia is classified as distal disease and at this point there hasn't been any improvement. Decannulation seems to be a ways off but, we are still hoping and praying that each time we go there will be some kind of improvement. http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/smile.gif

[Olga]

Hi
Grace was trached at nine weeks due to subglottic haemangioma. She is now two years old and no sign of the haemangioma going away yet. Olga

[J&Jsmomee]

Joel was trached at 4 weeks old because of respiratory distress due to his vocal cords closing down over his airway. The ENT believes that it is due to immaturity and that he will outgrow it. We're hoping for decannulation between 1 and 2 years!

[cwpeichel]

Colin is nearly 3 and has been trached since he was 5 months old. He was born with long segment stenosis with complete tracheal rings. He had reconstructive surgery at 4 months and complications (malacia & reocurring stenosis) are the reason for the trach. We have no indication on when he will be decannulated.

[drew's mom]

Hi Sue. Drew has been trached since 9/20/99. We were admitted due to his carbon dioxide levels were to high. We tried the bi-pap machine or c-pap(?) for 10 days he couldn't tolerate the machine. They told me my only option left was to trach him. also has floopy air way. Stephanie