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Ally has had a cough since the end of May.  Her pulmonolgist, Dr. Choo-Kang, has been working with us to try to get rid of it.  Unfortunately, what we have done to date hasn’t worked, so today we had to go to St. John’s for a bronchoscopy.  He wanted to get down into her airway with a scope to see what he could see.  Here’s the verdict:  some inflammation (bronchitis), probably infection in the outer-most sections of her lungs, and severe tracheomalacia (the biggest problem).  When viewing her trachea, he saw that when Ally breathes, sometimes she has 90% closure of her trachea (no wonder the poor kid can’t clear anything out of her airway when she coughs).   So what does this mean for Ally?  The first thing we have to do is get rid of the cough, so she’s going to be on an inhalant (helps keep her airway open),  an oral medication (to hopefully help strengthen the muscles of her trachea), and more than likely, she’ll be on an antibiotic to get rid of a probable infection .  More long-term treatment includes using a VEST, an actual vest, that Ally will wear that oscillates her chest.  She’ll need to wear that 20  minutes two times a day (indefinitely) to help get the secretions moving.  Problem…insurance doesn’t like to cover the VEST, and the cost is several (whatever you are thinking is several, multiply that by five and that is how much it costs) thousand dollars.  Yeah, we’ll cross that bridge when we have to. — The above treatments will be on-going (like forever), minus the antibiotic, of course.

Other things we need to do… Ally needs to have another sleep study done (this involves spending the night in the hospital, hooking her up to TONS of wires, and then having someone monitor her sleep throughout the night).  The doc wants to see how this condition disturbs her sleep.  If she has too many periods of apnea, she will likely have to wear a CPAP machine at night to be sure she breathes throughout the night.  — Ally also needs to have a CT scan done.  It is possible that there is blood vessel leading from her heart that is pushing on her trachea that is causing the problem (or some of it anyway).  If that is the case, surgery will be required to correct that.

Did she get this because of the leukemia?  No, this is unrelated.  Because she has Down syndrome, her muscles have a lower tone than a typical child - even the muscles on the inside of her body.  The muscles surrounding her trachea between the cartilage rings are weak, and that is causing the problem.  Tracheomalacia explains why she has such trouble with respiratory issues in the past.  Poor kid.

There you have it, the details.  We’ll keep you posted on the blog in the coming days. The sleep study should happen within the next few weeks.  The CT scan will happen in seven weeks.  Keep us in your thoughts.