What keeps me up at night

I used to stay up at night when I was a kid, like in third or fourth grade, and worry about nuclear war.  I was certain someone was going to accidentally hit the big red button that launched the nukes that destroyed the world.  (Fortunately, we practiced hiding under our desks at school so we'd be safe if that happened).

Strange what keeps one up at night.

Today, I don't worry about that so much, though maybe I should given Iran's nuclear ambitions.  Instead, I worry about whether Zachary's care team would be prepared for an emergency of the worst kind: a compromised airway.  The answer scares the hell out of me.

I have become increasingly worried that everyone, us included, have become too complacent about his care because he is doing so well.  Our sense of being "on edge" so to speak has waned in the months he's been home.  We've had a few mucous plugs (sticky secretions from the lungs that block the tube through which he breathes) but we managed to dislodge them without too much difficulty. 

But danger is just around the corner as long as he has a trach.  That's not just my opinion.  The American Thoracic Society official statement about the care of kids with tracheostomies warns that these children "are at risk for potentially devastating airway compromise."  At any time.  Day or night.  Whether you are ready or not.

Earlier today I made the mistake of reading an article about decreasing the accidental mortality of ventilator-dependent children at home.  It confirmed my worst fears:  that the primary causes of preventable death in ventilator-dependent children at home are inadequate training, improper response, and a lack of vigilance by caregivers. 

The paper provided a shocking statistic that a study of 950 vent-dependent kids at home found that the accidental death rate was 27.5 percent, the same as it was two decades ago.  I remember one of Zachary's NICU doctors telling us that one of the main reasons not to trach him was the risk of accidental death.  We understood that there are risks but ARE YOU KIDDING ME?

We got trained up on dealing with airway emergencies at the hospital.  Learned CPR for kids with trachs.  Learned how to bag him (give manual breaths with a hand-held bag).  Learned how to do emergency trach changes.  But practicing using dolls with no consequences is one thing.  I wonder how we'd react with it all on the line?  Or how someone else caring for him would.

That's what keeps me up at night.