Sunday, March 9, 2014

The New Baseline


Dear Ellie,

There is something about weekends...  Like clockwork, it's Sunday again and we're finding that you are further behind than when you started a week ago.  Way further.  If your oxygen needs climb any higher, we'll be in dangerous territory.  We're at 55 percent oxygen now, 20 points higher than last week.  I can't express how painful it is to repeatedly watch in guarded anticipation, all week long, as you slowly improve... and then witness it all evaporate in a 5 minute episode of hypoxia.  What happens if you are at 70 percent oxygen and have another episode like you did yesterday?

You've been swaddled in a little baby sized straight jacked so you don't tire yourself out.  I'm revisiting the literature on steroids.  If we run out of ways to get your lungs oxygen, a brain toasted by a few steroids is going to be the least of your neurological problems.

I keep looking back at yesterday and asking myself, fists clenched, "What the hell happened?"

I'm glad that I do.  I'd rather feel angry than depressed.  

2 comments:

  1. Just wanted to let u know i am thinking about Ellie everyday and today when i see her picture I can see a dramatic change in her appearance from even a week ago! Wow! She is coming along...a true bonofide baby! In other words...she has really filled out and this makes me so happy!!!!!!

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  2. Yes Robin, she has. She's perfect in every way, but its just those mysterious lungs of her :-(

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