Mayo Clinic

Bright and early Thursday morning Hubby, B and I ventured east towards Rochester for our semi-annual visit to the Mayo Clinic.  

The main entrance.

I love love love the Mayo Clinic.  It was here, in 2015, that we finally discovered B's bronchomalacia, after FIVE FLIPPIN' YEARS of wrong diagnoses from half a dozen other doctors.  

Funky glass sculptures hanging over the parking level stairs.

Doctors kept telling us his symptoms were caused by asthma and allergies.  Despite the asthma medications that didn't work, the worsening symptoms, and the symptoms that didn't make any sense for those conditions.  FIVE FLIPPIN' YEARS of illnesses and emergency room visits for B, and unrelenting stress and anxiety for me.  That anxiety is the main reason I stopped blogging.

The whole place has a vague art deco theme.

I finally requested a referral to see a pediatric pulmonologist at Mayo, who listened carefully and set up several tests.  One, a methacholine challenge test that would determine once and for all whether he had asthma (spoiler alert - he didn't!).  Another, a bronchoscopy that would send a camera into his lungs to see if he had any physical deformities (spoiler alert - he did!).  

Note the piano - sometimes there is a player, but not today.

The doctor found a spot in his right bronchial tube that was almost collapsed.  The cartilage in that area is either missing or too weak to hold open his airway.  It's open just enough for air to go through in normal conditions, but when he is sick, breathes heavily, gets his chest squeezed, or whatever, the tube collapses even further and he loses his breath.  

The ceiling of the pediatric center.

 

Any forced exhalation, such as a cough, sneeze or a gutteral laugh causes the collapsed area to function like a stop valve -- hence the barking cough (like a seal's bark, only worse) that is typical with this condition. And when he gets sick, the tubes become inflamed, closing the airway even further.  So the common cold becomes a nightmare.  

Malacias like this (broncho, tracheo and laryngo) are frequently misdiagnosed in children and in adults.  Most physicians don't even consider them when patients complain of wheezing, shortness of breath and a persistent cough.  It's so much easier just to say 'asthma' and send them home with an inhaler.

The 19th floor - our favorite place to chill between appointments.

Anyway, over the past few years, since the correct diagnosis and proper treatments, we have been able to manage B's condition fairly well.  A couple of FB groups devoted to this disease have been life-savers.  At today's appointment, our doctor said B's PFTs (pulminary function tests) looked good, which is totally awesome.  

The view is pretty great.

We have another appointment here in November for our annual check-up with the pediatric GI doctor, to check on B's reflux disease.  That's a whole other story of medical mystery and anxiety.  Being a parent of a kid with chronic disease is an adventure, to put it mildly.