Our Journey With Tracheobronchomalacia
In September of 2005, Mason was born at 36 weeks and came out
grunting. His retractions and low oxygen startled the nurses enough to
send him to the special care unit overnight to monitor him. They
blamed it on fluid in the lungs from birth and sent us home.
After many years of dealing with chronic bronchitis, pneumonia,
asthma, pleural effusions and many other airway related disorders, my
son continued to struggle no matter what medicine we put him on. We
had spent weeks upon weeks in the hospital and at doctor offices
trying every medicine we could and nothing was helping my son to
breathe. My frustration was growing. Inhalers became our daily life.
The nebulizer was our friend. We had antibiotics on had at all times
and often still wound up in the hospital with these uncontrolled
spells os respiratory distress that no medicine seemed to conquer.
Walking up the stairs, running, sports and more had become a thing of
the past as Mason struggled to breathe constantly. He had begun
sleeping in a reclined position just to get air in at night.
We had been seeing just a local allergy and asthma doctor who did no
testing on him and just repeatedly told me it was severe asthma. I
knew something else was wrong, but not knowing where to start, I
always just trusted the ER docs and our doctor that he had severe
asthma and it was still just “uncontrolled” and we were working to
find the right set of inhalers to help him.
Living in Cincinnati, we have access to one of the best Children’s
hospitals in the nation and I reached out to their “Difficult To
Treat” Asthma department and we started there. We tried more
medicine combinations and after a short while of noticing that nothing
was working and his pulmonary function testing was all just getting
worse instead of better, his doctor said we needed to look into other
airway issues. That this was more than just asthma. While asthma was
playing a part, something else was going on.
We started seeing one of the other pulmonary specialists that
specialized in malacia. He did a bronchoscopy and quickly realized
this was Mason’s problem. Mason’s barky cough, the fact that
asthma medicines weren’t helping him and at times even making him
worse, and the obstruction that was showing on his pulmonary function
tests all finally made sense. He had Tracheobronchomalacia.
A short time later we decided to look into surgical options for Mason.
He had been hospitalized again with an “episode” of distress, loss
of lower airway sounds, atelectasis and low oxygen. At this time he
was 14 and we had been dealing with all of this for far too long. His
doctor suggested a stent trial to see if opening up his airway would
alleviate any of his symptoms. Within a couple of days, the stent
placement made all the difference for him. It opening up his airway
enough that he could finally take in a deep breath. He could run up
and down the stairs with no issues. He wasn’t struggling like he had
been for so very long.
After the successful stent trial, we decided to proceed with a
Posterior Tracheopexy and Aortapexy. In this surgery, his trachea
would be opened up by adhering it to the muscles around the spine and
also by moving his aorta out of the way since CT scans revealed that
it was compressing down onto the trachea as well.
Mason’s surgery was about 6 hours long and he rested the first
night in the ICU. After that he spent three days on the surgical step
down unit before going home. His recovery was quite fast and the
response to the surgery was almost immediate. His barky cough
disappeared on day one. He no longer had to work to breathe just to
walk the stairs or the hallway of the hospital. He didn’t need a
handful of inhalers and constant nebulizer treatments just to get
through the day.
This surgery provided almost instant relief of symptoms for him. It
just took the right doctors, the right diagnosis and the right surgery
for our son to be alleviated from his chronic struggle to breathe.
Our Team at Cincinnati Children’s Hospital Medical Center:
Pulmonary: Dr. Erik Hysinger
General Surgery: Dr. Aaron Garrison and Dr. Daniel Von Allmen
ENT: Dr. Alessandro de Alarcon