Monday, March 3, 2014

Deciding Which Part of You to Hurt

Dear Ellie,

Today was the hardest day we've had in a long time.  I'm sick again, possibly your mother too, and it looks like that week you lost was permanent, after all.  Now, the doctors are recommending more aggressive treatment, primarily the use of postnatal steroids.  This is scary because the steroid in question is generally potent at improving lung function by reducing inflammation, but it also is known to dramatically increase incidences of cerebral palsy under certain circumstances.

The doctors aren't always forthcoming about the specific probability of certain risks, so after I trudged through work half-delirious I slammed down a Talle Chai Latte, quaffed a little bit too much Dayquil, and set off to do a thorough literature review on the past 40 years of medical progress when it comes to postnatal steroids.  As of now, I think I've finally climbed to the top of the heap, and things don't look quite as dire as I thought, but there are difficult decisions to be made amid lingering uncertainty.

It might appear at first glance like I'm just brimming with hubris to throw data at my own doctors, but this isn't about proving them wrong about a certain treatment.  I'm sure they've already read it all at least a hundred times more than I have.  I just want to understand their priorities, and I want them to understand ours.  Some doctors would prioritize physiological improvements that are visible during your stay at the NICU.  Others would prioritize long term well-being later down the road with some risk invited earlier on.

So really, my only humble wish is to, you know, make sure they know that if we had to pick an organ to get mangled, we'd prefer the lungs or the liver now, rather than the brain later.  I wish I had a way to make that NOT sound ghoulish, but the truth of the matter is this: regardless of what we choose, whatever we choose will hurt you.  Its just a question of deciding what part of you we would prefer to hurt...

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