Oh, my freaking God.

This is going to be another one of those hard things to talk about. I will, however, provide happy snippets for those willing to slog through the difficult stuff. They'll be down at the bottom, so be patient.

Background

We are not an all-purpose hospital. There is no obstetrical or labor and delivery unit, there is no dedicated cardiology unit, there's no pediatric unit. We work with several other fine hospitals within spitting distance with those things, so we don't do 'em. We do neurology and plastic surgery and tricky cancer treatments. Specialization means quality care in some cases.

However, once in a while we get a pediatric patient with something that the kid-doctors across the street don't feel comfortable treating. That was the case this week, when I got a teenager from the ICU.

She has a fairly rare blood disorder that can cause problems with clotting and hemoglobin levels and so on. She'd stroked out once as a child, and we'd done some stuff in concert with the child specialists to try to keep her from stroking again.

Unfortunately, the things we did didn't work. Worse, they screwed her up royally. This happens once in a while; you can't predict if or when a coil or clip or stent is going to come loose or migrate. You can't tell which patient is going to bleed suddenly and require emergency surgery. She ended up in the operating room getting a frontal lobectomy (chopping out a piece of brain to save the rest) after a major bleed and uncontrollable swelling put her life in danger.

Foreground

She came back to me two days ago. A month before she had left our floor on her way to the OR talking, laughing, walking, and with a wicked sense of humor. She returned with a dent in her skull, eyes that won't go to the right, and no use of most of her body. She's got a tube in her stomach, a tube to breathe through, a tube in her bladder, and a vacant expression. She knows what's going on, to a large extent, but is trapped behind the wall that repeated brain injury puts up.

They'd kept her in the ICU for a month to make sure she was stable. During that time, her hair matted and her skin got ashy and yeasty, nobody really talked to her...it sounds horrible, but it's the way of intensive care: you're more concerned with keeping your dying patient alive than with making sure they're clean and stimulated.

Still. I scrubbed her down yesterday and the washcloths came out black. Not the usual caramel-brown coloring that you see when a dark-skinned patient sheds skin cells, but black. With dirt. And sweat. And old shed skin. I cut the mats out of her hair and noticed that in some places she was bald--the matting had gotten bad enough that the hair had been pulled out by the roots. I rubbed her down with cocoa butter from head to foot in an attempt to soften some of the dead skin on her scalp, her back, her arms. I used a pick on her hair until I got the worst of the tangles out. During the entire process, she didn't grimace or fight me; she just laid there, occasionally closing her eyes and moving slightly into my hands as I rubbed her down.

Her mother was amazed at the change. Her pediatrician and I were furious at the state she'd gotten into. Most of the nurses at our hospital are white, and this kid was black. It's not that nobody took care of her *because* she was black, just that white folks don't generally know what sort of special care black skin and hair requires. Frankly, at a certain point, you have to get over your own fear of looking like some sort of ignorant cracker and *ask* how to take care of hair and skin that's different from your own. If you don't, your patient will end up with bedsores and broken skin and compromised health.

It wasn't just that she was dirty. It was that nobody had thought for a minute that she might need different care than they would, if they were lying intubated for a month in a bed.

A rare occurance

I almost broke down, talking over her case with the pediatrician. We ranged over social issues to personal issues to family issues, and I just got more and more frustrated with how my patient and her family had been treated. There was much more to it than her cleanliness, believe me. It was like her family, because they're quiet and shy, had just been forgotten.

But dammit, things will be different now. They *will* be. This girl will be clean and comfortable and happy. And someday, if I do a good enough job, she'll recognize me and smile at me like she does at her doctors and her mother.

Happy moments from the past week

1. A charming older man calling me an angel simply because I brought him a cup of coffee.

2. Hugs from the biker couple who'd dreaded coming in to our facility, thinking that nobody would respect them or treat them well because they both have multiple tattoos and leather vests.

3. The response from my patient's pediatrician when she saw the care I had given her patient.

4. Seeing some of our residents circulating back in after a rotation at a different hospital.

5. Flirting madly with an 89-year-old patient with myasthenia gravis and seeing him smile.