Sunday, March 2, 2014

Good Things Happen Slow; Bad Things Happen Fast

Dear Ellie,

After you received your newer, bigger endotracheal tube, things appeared to improve.  It was as though you were fascinated with some shiny new toy.  You started saturating normally, you weren't uncomfortable while being handled, either.  It was almost miraculous.  All this week, you inched closer to your chance.  Your chance to remove the endo-tracheal tube, which is the single biggest milestone we need you to reach.  If you don't, your lungs will progressively waste away.  All week long, your mother and I watched as they slowly decreased your ventilator support, tiny increments each day.  This new development seemed to push you within reach.  We had about two hours of hopefulness over lunch.  I saw some spring in your mother's steps on the way back to the hospital.

But then your blood gases came back.  Your CO2 was suddenly very high.  Your blood had turned acidic.  It was so unexpected that the respiratory technician ordered a direct arterial blood test, rather than another prick to the foot.  We watched for half an hour while they stabbed you fives times in the arm until they finally just threw up their hands and gave up.  That's when they turned to your respirator and did the only thing they could to prevent further acidification: they cranked it up.  In one minute all of the progress of this last week was wiped away.  

Now, I just feel tired when I look at your respirator stats.  They're worse than the days after you were born, but rather than having two months to prevent prolonged and sustained lung damage throughout your life, now there is only a few short weeks.    

I used to feel sad when we hit these kinds of setbacks, but now I'm just angry and I don't know why.  I might simply be too tired to try to understand.            

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