Does anyone have a child diagnosed with complete tracheal rings?

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Ashley - posted on 10/10/2013

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my daughter was diagnosed with complete tracheal rings at 2 1/2 months she had reconstructive surgery at 3 months and was intubated almost every week because of respiratory failure so she got a tracheostomy when she was six months and just this last july we go the trach tube out and had to do another reapir on the upper part of her trachea above the trach tube because that had closed off now she does great but she has this little part of the airway where they did the first repair that keeps narrowing we have been trying to dialate it but if that does not continue to work we are going to have to do another surgery. my daughter had 6 rings and they cut all of them out and spliced the two ends together.

Emma - posted on 07/21/2013

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I'm a 33 year old woman who has complete tracheal rings. I became ill at 3 months with bronchiolitis which saw me tubed and ventilated til I was 13 months old. I had a tracheostomy from then to get me off the ventilator. Also I needed a patent ductus arteriosis at nine months. My tracheostomy was tubed til I was 2.5 years then left patent til I was 8. It's not been easy and I get reoccurring infections have asthma and my lungs suffered damage when I was on the ventilator. But I'm still here and have 2 beautiful children. Don't lose hope. X

Emma - posted on 07/21/2013

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I'm a 33 year old woman who has complete tracheal rings. I became ill at 3 months with bronchiolitis which saw me tubed and ventilated til I was 13 months old. I had a tracheostomy from then to get me off the ventilator. Also I needed a patent ductus arteriosis at nine months. My tracheostomy was tubed til I was 2.5 years then left patent til I was 8. It's not been easy and I get reoccurring infections have asthma and my lungs suffered damage when I was on the ventilator. But I'm still here and have 2 beautiful children. Don't lose hope. X

Pamela - posted on 06/12/2012

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We had Finn's tube out for 3 1/2 weeks just barely, and he coded again last week as he got a HUGE secretion stuck in his airway and after 2 ENT surgeries an having his tube in for so long the cilia that help you move secretions up an out of your airway are still not functional enough to help him! Now they are talking about puttin in a trach tube, we have this meeting with all the ENT Dr.'s tomorrow...wish Finn luck! He has the worst case his Dr. has seen, an she says his level of having it is extremely rare! It is not fun at all, for him, or us! IO wish you all the best of luck that you may not have to go through the tougher stuff, as it is all tough! Prayers for you all and your precious chilren!

Stephanie - posted on 06/04/2012

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We do everyday not just for her health and what she may have to go thru in the future. Even though things are some what stable we've seen other problems she may encounter. My husband's insurance is changing to a high deductible plan. We tried going outside a non employer based plan that would have just copays for drs visits and meds but with her medical history the premium would be too high, she was also diagnosed with anxiety and gastritis, which the insurance company faulted her for as well. So we stuck to his plan and hope we can afford the out of pocket expenses. So I worry about ability to get insurance as an adult. I feel like she already being penalized for something she can't help. Guess I'm thinking to far ahead. Sorry I got off on another subject, good luck and blessings to all and thank you for hearing my story as well. I hope for the best for everyone!

Rebecca - posted on 06/04/2012

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Gabriel also has the innominate artery pushing on the trachea but bc of the tracheal rings, its not compressing it or so they said. So thats to be fixed too, I'm sure. Thanks for the prayers, Stephanie. I'm sure you worry and hope for the best for your little girl, too. You will be in mine as well. Blessings everyone!

Stephanie - posted on 06/04/2012

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My heart goes out to you all. Just the news of my daughter having complete tracheal rings was devastating but I didn't realize how much more it could be. I pray for all of ya'll!!!

Rebecca - posted on 06/04/2012

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My son is almost 2. He's been sick since birth with feeding issues, ear infections, upper respiratory infections, RSV, bronchiolitis, croup, apnea, cyanosis. He has Ds and long segment complete tracheal rings (full length of trachea). All tracheal rings are fused. He's on 5 breathing meds, about to add racemic epinephrine for our emergency times. He also has uncontrolled reflux (just starting Nexium) that is aggravating the rings. Another sleep study is scheduled for end of this month. We have 6 to 8 weeks to see if the reflux meds work. If they don't, we have to go in, do a fundoplication, as he has damage in the esophagus and suspected airway involvement. After the tummy surgery or if it is rectified by medicine, we will start planning next steps to repair tracheal rings. Right now he gets stridor when laughing, crying, breathing in fast, while sleeping and just periodically with no warning. He is also staying sick...sound like my little locomotive all the time. We are in watchful waiting for now...and its hard. I want it fixed but the surgery is frightening. He's already had open heart surgery, chest surgery, two ent surgeries, a cancer scare (heightened alert now). He is my fighter!

Stephanie - posted on 05/29/2012

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My daughter did not get diagnosed until she was 8yrs old. She did not have any problems @ birth with her breathing. Although I did have some problems with feedings. But she didn't lose weight so the drs did not worry. She also had rsv and a lot of upper respiratory infections but out grew them. Her condition was discovered by accident. She was having some stomach problems they put her to sleep to do an endoscopy. But when they went to put a tube in her air way it seemed to be blocked. They used a smaller tube that went down further and continued. While sedated we got called to return to the waiting area asap. We were greeted by 2 pulmonary drs. They told use what was going on and wanted to run a camera down her trachea to check for a blockage and that is when we found out about the tracheal rings. She goes once a year for breathing tests. At her last visit this year they did give her an inhaler. She is wheezin some and started to cough and complain of being short of breathe when she does a lot of running. So they said the inhaler may or may not help. So now we will continue with follow up visits @ UNC and hope she won't need surgery.

Pamela - posted on 05/29/2012

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I am the mother of Finn, who is currently 4 months old! He has been in and out of the hospital since he was 2 weeks old! At first he had rsv, and they thought that was it!
At 6 weeks amd after being in and out of the hospital several times, they decided to look further, he was not getting any better. Thus begins our roller coaster ride!!
They started with a heart echo that showed he had a left pulmonry artery sling. They then wanted to do a CT Scan to check out his airway. This is when they found he had complete tracheal rings. When they took him to surgery the next day, it was supposed to only fix his pulmonary sling, but when they got in there they found the severity of his airway. H had complete rings from his cricoid to his carina! Usually its only a few, but he is one of only 2 children to have them through the whole trachea! He also had severe narrowing in the trachea and left bronchus, as well as floppiness in both areas! Being at the mayo clinic in MN. our ENT dr. has only seen his level of severity in one other child, and it was while doing her residency in cincinnati!
After 2 high risk surgeris, and 8 weeks of being intubated, he now has had his breathing tube out for almost 3 weeks now, has to go back once a week to the or for bronchs, and we are still in the hospital.
Needless to say he had complete tracheal rings, but he had the most severe problems she had ever seen before, and even the Dr.'s cannot believe he is still with us today...he is our little miracle!

Erica - posted on 08/01/2011

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Yes! My daughter who will turn 8 mos. next week was diagnosed when she was 1 month old. It was a scary roller-coaster the drs. and surgeons had us on. Thankfully, she is not showing symptoms (she did at birth) right now, and so we follow up with bronchoscopies and chest x-rays ever 3-6 mos. She has 5 complete tracheal rings and some other things that are not affecting her either at the moment. She will see a surgeon in Cincinnati if she needs the slide trachealplasty. I would love to hear back from you and hear your story....
--Erica

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