Shooting in the Dark

 

Just a quick update, and a plea for ideas if you’ve got them (especially trach or Trisomy moms).

We’re here, still, for who knows how long.

He’s completed his bactrim antibiotics (high powered, broad spectrum, should get anything antibiotics), labs look good, and have continually trended in the right direction. White blood count is pretty darn normal at this time.  We’ve repeated labs ad nauseum, x-rays, repeat viral panels, just sent (another) protected trach brush.  Cleaned out and looked at his ear drums. Looked at urine, too, and his BMs.  Everything looks good.

But not only has our progress stalled, we’re moving backwards.  Oxygen is back up.  Fevers are returning, 100-101 for the past few days, but 102 today, pretty much afternoon into nighttime.  Last night he acted like he hurt, he was crying.  The team did a complete head to toe exam and couldn’t find anything.  He’s played a little today, but not much.  We’ve looked at everything we can think of.  

And yet, here we are.  It’s been two weeks since he started having fevers (almost to the hour).  Sigh...

Our minds have the need to know. When we don’t know, we make assumptions —

they make us feel safer than not knowing.  And we are pretty much

always making assumptions. 

Miguel Angel Ruiz