Cincinnati or bust

The day we met Ben he had incredibly noisy breathing and a deep, croup-like cough. When I asked his nanny about the cough, she said he clears his lungs every morning with lots of coughing due to his heart condition. She also advised we not let him have more than thirty minutes of exercise. Nanny and New Mommy both knew this boy needed to be kept under close tabs. We made our promises to love him forever. And thus began our journey…

Twelve months later, our list of medical issues has grown quite long. Aspiration, paralyzed vocal cord, profound unilateral hearing loss, talk of congenital infectious diseases (since ruled out), crazy amounts of strep, rare urinary bacteria, mild sleep apnea, and so on. But his repaired heart looked great! And his rattly breathing was written off as gunky vocal cord noise, a hefty kid with Down syndrome, and reactive airways.

I was not satisfied with the answers. We spent to many nights jumping out of bed to see if Ben was still breathing during horrendous coughing spells. His nostrils flared too much for my liking when he ran across the room.  I bought my own pulse-ox. I took videos of his coughing and breathing. I cried next to his bed. Our wonderful pediatrician always took my mom instincts seriously. The local specialists? Not so much.

So, when our ENT sat me down in the waiting room after Ben’s tonsillectomy to tell me they had trouble intubating him, I was not surprised.  When he told me they found several complete tracheal rings, making a portion of Ben’s trachea the same size as a newborn baby’s airway, I was shaken, but also kind of relieved. We finally had an answer.

So what the heck are complete tracheal rings? I’ll let Cincinnati Children’s explain:

The trachea (windpipe) is made up of cartilage, which is also called tracheal rings.  Normally, tracheal rings are “C” shaped.   Complete tracheal rings are “O” shaped.  The “O”-shaped rings are always smaller than the normal “C” shape and may make it harder to breathe due to a narrower trachea.

Complete tracheal rings are a rare condition present at birth.  It is usually associated with other vascular (blood vessel), heart, or lung abnormalities.

Children with complete tracheal rings have noisy breathing which gets worse over time.  Typically, their breathing sounds like a “washing machine”  because of the noise made when they breathe in and out.

Some children may have to work harder to breathe, causing a sucking in around their ribs and chest (called retractions).  Some children may also have trouble with feeding.  Colds or respiratory illness can also make breathing worse.

So here we are, with the poster child for this condition. Which is why I’ve spent the past three months making phone calls, talking to insurance, asking for letters, looking at my calendar, praying for peace, and arranging details. Ben has been on medical house-arrest to prevent sickness as while we await our trip. His IEP was even changed from classroom to home instruction. We’ve been washing our hands a million times a day. And we are soooo close to more answers.

On Sunday morning, we leave for Ben’s week-long evaluation with the aerodigestive team at Cincinnati Children’s Hospital. As our local ENT put it, we are headed to the Mecca of Airways. And because everyone needs an 8-year-old assistant, Addie will join Ben and I with the promise to be my helper, do her homework and “maybe play on the iPad a little.”

 

 

 

 

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