Black or White

Tuesday, November 6, 2012


Probably one of the hardest jobs I've ever had to do is make decisions for Alli's care.  To be honest, life and death decisions have been easier to make than this one.  Those decisions were black and white, but our decision today, is oh so grey.  

Alli failed her sleep study.  She was diagnosed with moderate obstructive and moderate central apnea.   

Obstructive Apnea:  The most common type of sleep apnea and is caused by obstruction of the upper airway For Alli, it is suggested her tonsils and adenoids are the cause.  I don't dispute this suggestion, she does snore and is a heavy mouth breather, day and night. 

Central Apnea: Central sleep apnea is when you repeatedly stop breathing during sleep because the brain temporarily stops sending signals to the muscles that control breathing.

During her sleep study, and probably on any given night, Alli stopped breathing around 200 times over an 8 hour period.  150 were obstructive apnea episodes and 50 were central apnea episodes, meaning her brain forgot the tell her to breathe. 

Both extremely scary to think about. 

The course of action: remove tonsils and adenoids

Seems simple enough?

Not so much.

While Alli is scheduled for surgery for November 27, I'm confident that will not happen.  We are awaiting a call back from her cardiologist to get his take from a pulmonary hypertension standpoint.  My gut has an ick feeling when I think about her undergoing this procedure.  That ick feeling is enough to force me to reign everyone back and allow my heavy duty research and parent advocate skills step in.  It's all I know, really.  

At this point I'm pushing to try c-pap, bi-pap, or even vapotherm at night.  At least until she's a little bigger, a little older, and a lot stronger.  It is cold and flu season after all. 

And in the mean time, it doesn't hurt to get a second opinion.  We have just been referred to Cincinnati Children's Aerodigestive and Sleep Center and Airway Clinic.  This team is a world renowned interdisciplinary team that will take a look at and hopefully tackle Alli's pulmonary, apnea, and feeding issues. 

To say I'm excited would be an understatement.  This is where I've wanted to be all along, but before her apnea diagnosis it would be a year or so down the road before we could get here. 

This might just be our black and white answer after all. 

Alli, patiently waiting and listening during the ENT consult. 


 gJackie

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