Friday, February 22, 2013

We have had a few difficult days.  It was difficult to watch as Sarah seemed to get worse.  It was difficult to worry about her pain and emotional state while she was on a paralytic drug and could effectively let us know much of anything.  It was difficult to monitor clinical signs- numbers and more numbers- more than my baby. By now, I know the numbers.  I know what they should be.  I know her happy heart rate, her sleeping heart rate, her regular respiratory rate, her girth etc..  I also know to trust her more than the numbers.  The paralytic drug made me crazy.  I watched those numbers with more vigilance than I ever had.  

Then I got sick.  All afternoon I told myself that I was just tired.  As afternoon progresses into evening, symptoms arrived that are not rationally explainable by exhaustion.  I had a bug.  I had to leave.  Sarah must not catch whatever I had.  I wiped everything in the room with those yucky hospital wipes, and I went home.  It was very difficult to walk away from Sarah.  Josh could not come.  No one other than the parents can stay overnight.  

I spent two nights at home.  Today I came back to the hospital.

Sarah had her first trach change and that means that Sarah is off the terrible, horrible, no good, very bad, paralytic drug!  Sarah is weaning on sedation and on her vent settings- and doing very well with both!  Most exciting of all: when I came in today I did not have to measure her well-being using mysterious and interconnected numbers.  Sarah was smiling.  She smiled when we talked to her.  She was sweetly argumentative.  (Sarah likes to shake her head no when she knows you are hoping she will say yes.  She smiles as she does.  "Will you say 'Hi' to Mommy?"  "Were you well-behaved last night?")  Her numbers look good too.  But I can ignore them again.  

And now she is asleep.  It is the sleep of a tired child.  It is peaceful and lovely.  It is the "sleep" of sedation.  She was awake and playing and happy all day.  Now she is asleep.  Hopefully for the night.  One of these days I will get around to exploring some of the thoughts and emotions rattling around in my head and heart.  Tonight I will sleep.  

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