"Patience is a Virtue"

It is several hours later and Ayden is still extubated.  There has, however, been quite a bit of activity in his room since then.

He got rather mad with the extubation team after they pulled the tube and were attempting to hook him up to the vapotherm machine.  Several times he was apparently rather content to just hold his breath.  Their solution to that was to hook him up to CPAP, which he isn't exactly a huge fan of, either.  He remained settled for a while, but eventually became rather upset.  After about 15 minutes, it got to the point that the doctors were called in to assist.

To make a long story short, after much consternation and hand-wringing, Ayden is now connected to a BiPAP (bilevel positive airway pressure) machine.  This does not constantly blow air up his nose like the CPAP.  Instead, it jumps in with a little bit of air movement support once Ayden initiates a breath.  In other words, it gives each breath he takes a little boost, without the constant, head-hanging-out-the-car-window-at-70-miles-an-hour sensation.  His last blood gas wasn't all that great, so they are playing with the settings on the BiPAP.  With it on, he really looks like he's going to flight school:

It is becoming very hard for us to not be frustrated.  I have tried to tell them how he will react to the CPAP, but they do it anyway.  What I expected to happen is exactly what happened.  We seem to be doing the same things over and over again and getting the same results.  What was it Einstein said about insanity?

I know they are trying their best, but I am quickly losing my grip on rationality and objectivity when it comes to Ayden's situation.  It doesn't help that some of the decision makers involved right now aren't all that familiar with his history and how he responds to certain things.  I wish they had tried the regular nasal cannula first after extubating, rather than going straight to vapotherm and its much larger cannula.

I really don't know what to think anymore.  We're still chasing Ayden up and down and around.  He seems to be either too sedated or not sedated enough.  Each causes their own problems.  He is certainly not making it easy on us, or on the hospital staff.

As I said, we are frustrated.  Increasingly so.  Undoubtedly, the staff is therefore becoming increasingly frustrated with us.  I am trying my best to not become "that parent."

Patience is a virtue.  I'm trying really hard to be virtuous.