mutant anomalies……..

Its hour 5 of spinal surgery.  Surgery number three in my two days of marathon complicated crazy skeletal dysplasia cases.  Even though I have been given a stool to sit on. I am tired. Shivering and Sweaty from sitting in one position all day.  It has been an almost DISASTER case, we loss motor signals and for a few terrible minutes we thought we had robbed a little girl of her ability to move or even breath…I prayed the whole time terrified of the power we had over these lives. All I could think of was the conversation we had when she fell asleep about how she liked to read June-nee B Jones and how her Dad hugged her before he left her.

We are closing.  Its me the fellow and the resident. The fellow talks about how much he loves children and resilient and adaptable they are.  I agree with him and smile down at our young patient so  grateful for her resilience today.  Then the fellow goes on to say that eventually around late adolescence he finds his patients changing particularly his special needs patients they lose their adaptability…they become lost. He steals a glance at my eyes and says Did that happen to you, Amy?  Before I can answer he says ” But you are tough.”  There were a million things I should have said. I should have talked about transition and how hard it is in a world that does not make niches for disabled adults, where there is no health insurance, where adult doctors are terrified of you and you have to go from being a cute, pitiful disabled child to a dependent adult who feels worthless in a world that does not have a place for them. But my pride got in the way….I stood there with my shoulders back, head held high and told him that the way i thought about life was simple I figure out what I want and I figure it out.

He smiles.  I am not a good surgeon. Surgery is right up there with ballet dancing in my world. But these people respect me in a strange way, as if I was a really brilliant surgeon.  Maybe its because I am a good clinician, maybe its because there are just nice folks. Or maybe its because I prove that what they do is worth it. That spending 7 hours on a 7 yo with a disease you have never heard of whose neck is collapsing matters.

The surgery ended and we did one more. Then we had clinic today. One of my Kniest patients came back after two weeks of rehab. We have become friends, I spent nearly every other night with them since they have been here. The little girl has asked repeatably if her Dad can adopt me.  I took her history close to the end, she looks right at me and says YOU WANT SO MUCH INFORMATION, YOU ARE A SPY.  The NP who works with my attending was just outside the room at that moment and tells the little girl that I WAS HER SPY.  Its true….Its true.

I am a spy. I am a spy in the OR from the land of patient. I am a spy in the exam room from the land of doctor.  In both worlds I live but in neither do I fit in entirely. My knobby hands and stiff wrists and tired knees give me away in the OR  and my knowledge and curiosity gives me way in the exam room.

for a moment I felt a little homeless. a little lost. a little in limbo between my parallel universes.

in the end I looked over at my young patient and I smiled.  I am well informed my friend.

Because I know how scary it all it is, how vulnerable and how big the risks that we take with the fragile children that are entrusted to us but I also know how tough we are, how hard we  are willing to fight and how much it matters.