Monday, July 18, 2011

Senses, Memories, and We're Still Here

It’s kind of funny how the senses bring back memories.  We rely so much on sight that I think we often forget the rest of them.  I’ve been in the PICU several times since Aaron’s last visit there, but only to the front desk.  Friday night, walking back into the main area, the smell hit me.  It’s not a strong smell, or an unpleasant smell.  But it is it’s own smell.  And it says. “PICU.”  I hadn’t even ever registered it before, but all of a sudden, I felt that tightening and increased awareness that comes with having a child in an intensive care unit. 

Then Saturday morning (I didn’t notice it the night before), I heard the Drager alarms.  The Drager is the ventilator that is used in the PICU that is so much more sensitive than the home ventilator.  It’s not the most sophisticated one they have, but it is the most sophisticated one we’ve had to use.  I learned to tune the alarms out.  They’re not shrill or unpleasant.  More like a computer-generated melodic chirping.  Unlike our home ventilator, I could do nothing with it.  I couldn’t even adjust the oxygen.   So in February with pneumonia and in November & December before our vent trials, I learned, or I thought I learned, to not hear them.  But I heard them on Saturday morning.  Again, all the anxiety and worry came right back.  I knew, mentally, that my child wasn’t on it.  But emotionally, my body responded as if he were still in that situation.  The situation where I was worried that he might not make it.

This morning in church, one of the patient’s alarms went off, just briefly.  It was all the way across the room from me, but my first instinct was, “Is Aaron okay?  What’s he doing?”  Then I had to laugh to myself, because it wasn’t even him.  Yep, our body remembers.  I don’t think our eyes are the most reliable sense.  I can see something and forget.  But apparently my sense of smell and hearing bring back in a flash memories and emotions that I haven’t even acknowledged .

9 p.m.  Sunday   Aaron has slept soundly almost all day.  Even when he’s been awake, he’s been pretty dozey.  I guess last night was pretty exhausting for him, too.  But he’s awake now, and playing.  When shift change was over, the night nurse and I did his trach cares and he was flirting with her.  Even gave her some smiles, which have been in short supply lately.  Now he’s playing with his toys.  He keeps setting off his alarms, but it’s because he’s wiggling and stretching.  He’s even getting a hold of the shiny cellophane in his ball and pulling on it.  That takes fine motor control that he hasn’t shown before.  I don’t know if he’s doing it on purpose, but he’s hooking it somehow.  When I showed him a small stuffed animal, he actually reached out and took it in his right hand and brought it close and cuddled it for a little while.  He’s had such a rough week and a half, it’s really nice to see him interested and playful again.   I don’t mind if he stays up all night and plays.  It’s if he decides he wants to see the RT and nurse in here all the time that I have an issue with.

7/18 6:30 a.m.  Aaron had a much better night last night.  He had a few little desats, but not too bad.  There was a big one about 1 a.m., like the ones he had the night before.  I’m not sure what to think.  I don’t know if we’re good to go home, or if there will be more problems tonight.  I think I’ll ask for an x-ray when we see the doctor, and I’m also wondering about some of his labs.  His hemoglobin, hematacrit and platelets have slipped.  What I don’t know is if the slip has been significant.  I’m just not sure what to do.

1:30 p.m.  Okay, so we’re staying overnight again.  Apparently, sometime during his large desat in the night, the oxygen also came undone.  That’s happened before, both here and at home.   But the upshot of it is that we’re not sure how much was desat because of him, and how much because he just wasn’t getting enough oxygen.  And he did continue to have several minor ones.  This morning his split S1 sound (in his heart) was not audible.  We also got a chest x-ray which doesn’t look much different from before.  So the plan is to watch.  If he continues to do as well as he has this morning (he’s been great so far), we’ll chalk it up to post-op stress and go home tomorrow.  If he does start desatting again, even just the small, frequent ones, we’ll look at probably a partial transfusion tomorrow.  His red blood cells, or lack of, won’t cause a desat, but they can make it harder to come out of.  Kind of like a freight train image.  With fewer freight cars to carry the oxygen, it’s harder to recover when he gets behind.   So that’s where we are right now.

On a fun note, we got to see Nick this morning.  We met Nick one year ago when we were in the hospital for heart failure.  Aaron was only about five pounds, maybe, then.  He's three times that now.  Nick was our PICU nurse for several days when Aaron was fighting heart failure exactly one year ago.  It was fun to talk to him and listen as he was so thrilled to see Aaron looking so good.  Of course, after playing all night, Aaron mostly wanted to sleep.  Little monkey.

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