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.  


  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!!!!!!

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