I am meant to do a thorough neuro exam every hour. I am meant to understand dermatomes, Brown-Sequard syndrome, and incomplete cord transections. I am not meant to handle eight vasopressor drips on one patient.
So it was with fear and trembling that I got to the unit to follow an experienced CV nurse. The patient she had was one of those who requires two nurses: every once in a while, you'll see a one-on-one (for instance, if somebody's undergoing continuous, slow dialysis), but two-to-ones are very, very rare.
What does it take to be a two-to-one patient?
Let's start with a rare genetic disorder that only about a thousand people in the world have, and make it one that only, say, vegetarian left-handed expatriate Iranians living in Hungary are prone to. (Of *course* that isn't the real disorder. Do you think I'd violate HHIIPPAAA that way?) Be certain that your patient fits none of those categories.
Add on the necessity of not one, not two, but three--so far--solid organ transplants over the lifespan of this particular patient. If you can make one of them a re-transplant, so much the better.
Make sure that that weird genetic disorder isn't diagnosed until after the first solid-organ transplant; that way, you'll stand a good chance of ruining whatever organ you transplant the first time with the complications of said genetic disorder. (As an added bonus, make sure that the patient's sisters and brother all find out that they're carriers of this nasty disease, and fuck their brains, their future plans, and their reproductive decisions up as a result.)
If you can manage a rare-but-dangerous viral infection, tack that on as well.
Oh, and be sure you put in for an order of adult respiratory distress syndrome, with a side of sepsis.
What you end up with is an absolutely beautiful young woman on a ventilator, with a midline incision that runs from belly to brisket, six pressor drips, and very little chance of ever waking up.
I left my job at Planned Parenthood the day that a twenty-seven year old woman came in with her pregnant thirteen-year-old daughter. The woman asked me if I expected her to cry over her daughter's being pregnant; the idea that any other possibility would present itself showed me such a huge gulf between her experience and mine that I could no longer deal with the disconnect. I had thought that that was as bad as it got.
Until I saw a smart, funny, gorgeous girl of twenty-three hooked up to hinty-bazillion machines, all of which were dedicated to keeping her body alive until, frankly, her parents and siblings could work up the courage to say goodbye.
The day wasn't made any easier by the fact that I had known her before, years ago, when she came in to our floor and ended up being diagnosed with that crazy genetic disorder. I thought then that she wouldn't make it to nineteen; I was wrong. Her parents showed me the pictures of her on the campaign trail for Obama, the snapshots of her hanging out with Sasha and Malia and Michelle and Barack. They told me about how she felt so strongly about particular issues up for debate in the Texas Legislature that she disregarded the advice of her doctors and went to testify as an advocate for battered women, how she ignored the symptoms of organ rejection in order to go to a conference on providing health care to uninsured people. There was a framed picture of her getting her Master's degree on the table by the bed.
And two pumps with three channels each, a balloon pump, a ventilator, and three pages of IV drips that had to be administered at exactly the right times.
I guess it bears mentioning here that her parents and older sister recognized me the minute I walked into the room and called me by name. It sucks when people you have to disappoint remember you so well.
We walk a fine line, nurses and doctors. On the one hand--and I think this is more true of nurses than of doctors, except in rare cases--we gain a degree of intimacy with families that would be inconceivable in most settings. On the other, we have to maintain that professional distance that allows us to advocate, to educate, to break bad news.
Sometimes, that last is easy. You can manage, even with people you see more than once or twice, to keep your distance. Sometimes it's very, very hard. And sometimes, despite your best intentions, you fail completely at being a detached professional person.
I was not the person who extubated her. I was the person, though, who turned off all of the drips, and hung the morphine up, and titrated it so that she didn't show any distress, and who laid my useless expensive stethoscope against a chest in order to hear what wasn't there.
I was the one who had to look across her body and tell her parents and her brother and her sisters, "She's gone, now."
And I was the one who broke every professional boundary imaginable by standing in her room with them and crying over the loss of a reasonable, decent, driven young person who had bad, bad genetic luck.
In a way, I'm glad it was me. I was there when she found out she had this thing wrong with her that would shorten her life; I was there when she told her parents, quite matter-of-factly, "This won't change any of the plans I've got." My ability to translate medicalese into English eased their transition from normal family to family with dangerous medical condition; it helped that I could put things in every-day language and thus calm some of their fears.
But even two nurses, six drips, a balloon pump, and all the translation talent in the world can't save somebody, sometimes.
Still, I'm really, really glad I was there. I'm glad I got to see what she'd done.
I'm glad I got to say goodbye.