Tuesday, April 26, 2011

I Hate Rollercoasters

How do you describe the rollercoaster that you ride when parenting a medically fragile baby?  I HATE rollercoasters.   I always have.  Even the tame, baby ones make me feel sick and shaky. 

It seems to start off slowly.  A couple more alarms.  A little more oxygen.  Maybe we can’t turn it down as soon or drop it as fast after a hypertensive episode.  Then a little more oxygen.  I start to get a little irritable.  I can’t focus on much of anything else for very long.  I’m always checking and rechecking his vitals.  I can go weeks without taking his temperature, but when he starts acting “off,” I take it ten times in a day, and that’s if each time is normal. 

We still can’t turn the oxygen down to where he usually is, and I start doing CPT, a lot of CPT.  And suctioning, even though we’re really not getting much out.  Is his diaper wet?  Dirty?  As much as usual?  Checking and rechecking oxygen tubing and connections.  I start to get a knot in my stomach.  When I’m gone, every time my cell rings I wonder, is the problem getting bigger?  I can’t pay attention to anything else, but I also need to get out of his room and stop looking at his monitors.  I’m agitated.   Worried. 

I make the call to PCMC to talk to a respiratory therapist and get probably the only one who isn’t familiar with Aaron.  We go over things, and he really can’t tell me much without seeing him, but right now at least, it’s probably not emergent.  He suggests changing the trach.  It’s crossed my mind.  But it is so traumatic for both of us, and it’s never been plugged before.  But we’re still going higher.  Even higher than yesterday.  So I steel myself.  And I tell Aaron we have to do it. 

I hate trach changes.  And they never help.  But we do it.  And I hate it.  And he hates it.  And he cries and cries.  So I hold him and rock him and I want to cry too.  And then I suction some more.  And no, the trach is not plugged, at all.  There’s nothing on it.  But then, his numbers start changing.  And he’s in the high 90’s.  And he stays there when I start to turn down the oxygen.  Then I see a 100%.  So I turn him down some more, and he stays high.  And he’s happy and playing.  He’s down even farther on his oxygen usage.  In fact, even though he’s eating which requires a lot of oxygen, he’s almost down to his baseline, lower than he’s been in the past 36 hours.  And my heart rate comes down and my stomach unclenches. 

Is he all better?  No, not quite.  He’s still a little high.  He’s probably got some minor virus, but I feel like the ride is coasting into the station.  I can get off, for a little while.  And go find a ride I like better, like the Ferris wheel, or the carousel.  Until the next time the ride takes off...


  1. Ferris Wheels can get scary if they are up high and you stop. Stick with the Carousel and just get on a pretty horse, or if you don't feel like the up and down then just snuggle in on one of the benches and enjoy.

  2. Rebekah,
    I know exactly what you mean! Simple colds are never simple. Even the easy days have me questioning if today is the last. My heart goes out to you and my prayers go out for you. Oh, how I wish I could make it easier.