Tuesday, June 4, 2013

Grasping at Straws

So this morning I woke up and Aaron was looking fabulous!  Absolutely beautiful!!  He was sound asleep and his heartrate was in the very low 90's, right where it should be, usually is, hasn't been for a week.  And he was on home settings, although at the higher end of normal for his oxygen.  Wonderful!  What happened? Who knows.  The consensus was it was probably a plug ((shudder)).  Yeah, it's exactly what it sounds like.  A plug of mucus, plugging, or blocking, the airway.  Um, yeah, NOT a good thing to have, but it looked like we had worked through it.

So what to do?  Go home?  Hang around?   PICU or floor?  Maybe have pulmonology take a peek and be on our way.  But you don't command a performance from pulmonology, so we wait for a while.  After a little bit, we find there's a room on the floor, and since we don't look like we even need to be in the hospital, there's no reason to be hanging around the PICU.  So up we go, and we'll decide later if we're going on or hanging around for the evening.

Uh, yeah, we're not going anywhere today.  Just after lunchtime, he was sleeping quietly, and started to slip a little on his oxygen.  So we turned him up, and up, and then up some more.  And silly kiddo, he doesn't seem to get that when you turn the oxygen UP, he's supposed to follow up, not DOWN.  But down he went.  So oxygen is going up and he's going down.  He finally decided at about 68% (yep, you read that right, 68%) that maybe he needed to cooperate.  But by then, we're bagging him, again.  I'm bagging and the respiratory therapist is suctioning, and he slowly turned around.

Just as he finished, the pulmonologist came in.  We told him he'd missed out on the party.  And then the attending showed up, too.  Double party!  And we kicked around some ideas.  I just wish there was an obvious answer, and if it was one that I liked, that would be a bonus.

So here's what "might be" happening.  There's a decent chance it was a plug.  At least, it was kinda acting like it.  Except that you tend to get plugs when you're dehydrated (he's not) or sick (nope) or have really sticky, thick secretions (none of those either).  It may be that he's still struggling a little with asthmatic symptoms and he still needs his preventative steroid.  But again, he doesn't sound like it or look like it.  One of my least favorite options is that he just can't handle a PEEP of 8.  Again, that "shouldn't" be it.  He shouldn't be struggling with it after he's been on it for three-plus weeks and had great labs and x-rays.  It doesn't make sense, and that's coming from a couple of the most knowledgable people I know.  But then, there's a lot that Aaron does and has done that doesn't make sense.

This kid doesn't play by the rules, he doesn't read the directions.  And for the most part, we're so grateful for that.  He's made up his own playbook time and again.  So perhaps we just need to continue to follow his lead. I would love to get him off the ventilator at some point in time.  But if the vent is what he needs, then the vent is what he gets, even if it means giving up or at least postponing some other things.

So for now, Dr. U is putting him back on his inhaled steroid long-term.  (I asked how long, and suggested that perhaps at least two months, until MY heart rate had a chance to return to normal.)  We're obviously not going home tonight, and we'll see about tomorrow.  And if he does this again, we'll take that step backwards and increase his PEEP.  On a positive note, for now anyway, his heart rate is back down about where it should be. And he no longer looks all spotted from not having near enough oxygen in his bloodstream.  I'll take that.

What lies behind us & what lies before us 
are tiny matters compared to what lies within us.” 
~ Ralph Waldo Emerson

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