Could be better; could be worse

We had our big appointment with the pulmonologist today to discuss the results of the sleep study that was done in December. 


The verdict:  could be better; could be worse.

The good news is that all the doctors agree that it is more likely than not that Zachary will eventually outgrow his breathing problems and eventually rid himself of the ventilator, get his trach removed, and not need supplemental oxygen. 

Whew!

The bad news is that it could take a long, long time, at least much longer than we had hoped. 

The next step is another sleep study in June, which hopefully will yield better results.  If it does, a long and drawn out process called decannulation will begin.  That's just a fancy word for taking the trach out of his throat and making him breathe through his nose and mouth.  (So it looks like the earliest he could be free from the trach would be sometime next year, probably during the summer). 

If the sleep study in June goes poorly, we'd simply wait and do another one in December.  I don't even want to think about what would happen if that one was bad.  Basically, the longer he needs the ventilator and supplemental oxygen the worse his lungs really are and the higher the chances are that he might need such respiratory support for years.  

We also learned that he's doing something called paradoxical breathing, in which his chest wall moves in when he inhales and out when he exhales, just the opposite of what's supposed to happen.  The doctor said it could be a sign of an airway obstruction that might need surgical correction prior to decannulation.  But that's way far down the road.

So we're in for more of the same but still optimistic that our guy will one day be untethered from all his medical accoutrements.