22 January 2011

"…and she throws things at people who walk into the room…”

 Anna. My angry little girl.

I use angry as an adult term. Little girls might throw tantrums, get mad at their parents for grounding them, want more TV, more chocolate, more toys…less siblings.

This little girl is angry.

And I get it. She’s five. She has a disease that will shorten her lifespan. It will. Significantly? Likely. Will she need a transplant in the future? Probably.
And right now… she has the heart of an 80 year old hypertensive smoker and she needs treatments and she’s on who knows how many meds… She’s in the hospital, at least every six months (and this is if nothing is wrong), for weeks at a time. Right now she can’t leave her room. And her room is covered in pink and princesses – the hospital has a lot of toys they give and loan (it’s amazing, actually). I haven’t figured out exactly which are hers. Sometimes the toys fight – a lot – and sometimes she points out which ones are polite. Sometimes the others have to go in a secret corner.

She’s an angry little girl.

I thought I had won her over today (I’m actually doing pretty well, considering, and compared to how everyone else thought she might deal with me). It’s partly about trust – I was running out, late, and I stopped by to tell her I couldn’t play right now, that I’d have to come back and play tomorrow. (With my adult patients in the hospital? We sit and talk. With the kids? We play… I have learned, thus far, that the nice-black-pants are not good for peds in-patient, because I’ll be spending a significant amount of time sitting on the floor).
I opened the door after I had hastily thrust on my mask, hand sanitizer just starting to evaporate. “Anna, I can’t…” she ran at me. If this was my cousin’s child (or many of the other children of my personal acquaintance), she would have been running to hug me. But no…not quite. She was running at my lizard.*

*It’s peds; I have a bright blue lizard attached to my ever-present bag (WE DON’T WEAR WHITE COATS WITH THE KIDDOS! and the peons rejoice..) It’s the distract-the-child version of a penlight. (ie, open the mouth, shine a light in the kid’s eyes). Also used to check gross and fine motor coordination in the little ones and to just mesmerize them and get them to stop crying as you try to examine…

And she meant to take it.

Yesterday, she stopped talking to me when I left, after dinner was brought in. Her dad had just returned and I…wanted to go home. I was done for the day. And as much as I had enjoyed the time, dusting off my playing-with-five-year-olds skills, it was a good exit point.
“Anna, I have to go now. I’ll be back in the morning…the lizard and I will be back in the morning.” (we’re still looking for a good name for him. I think she decided it’s a ‘him’ lizard. It's blue, after all, in her pink-pink-pink-and-purple-room). “I want the lizard!” “I have to keep him, but he’ll come back with me.” “I want you to give him to me.” “No, Anna…”
It goes on. And on. I leave. Only when I return in the morning and am greeted somewhat grudgingly (she was busy typing stories) do I start to make my way onto her good side.

She’s an angry little girl.
(few days later)

Now she runs to hug me when I walk into or exit the room (try to exit the room, let’s say). Me with my mask on – at least we don’t have to war the alien yellow paper (are they paper? some sort of strange consistency. Something disposable) precaution robes (can we talk another time about how random/arbitrary medicine really is when it comes to precautions? K). (At the VA, at least, they’re real cloth and thus washable. These, everytime you leave the room, you throw out). With her, it’s just a mask, but the plastic shield covers my eyes. I throw that out, too. Anna can’t leave her room – not yet – maybe in a week. They want her heart to be a little better before she leaves, this time. This hospitalization.

It’s morbid to think about another kid dying. Eventually, she’ll need that. Eventually. Maybe she’ll be adult-sized by then, though. But then I think about a young-healthy-organ-donor-adult dying, probably in some sort of trauma, so the organs are still good. Morbid? Yes. But as humans, we/ (I) care about the particular and not the general, the angry little girl in front of me and not whoever else will die to help her live. Someday.

This time (again, a few days later), she won’t let me leave the room, she’s climbing up me and is entwined and firmly clamped around my legs. “NO!” It takes awhile, but eventually, I get to go, after we’ve pretended to travel to magical lands (she instructs me how to do this, obviously), and we’ve taken the princess suitcase (probably at least as heavy as she is, but she insists on carrying it) with us on the pretend airplane.
I try to do the doctor bit, too, a little. I listen to her. I check her pulses. I tell her to eat, I talk about the treatments she's supposed to have. But I do the same thing with my adult patients – I sit, and I talk, and this time it’s on the floor and playing and figuring out what she thinks/wants through what she plays. She hasn’t been making her toys fight, the past few days. And this angry little girl... it's when I'm pulling her off me by the arms, picking her up, getting her to sit or stand on the chair or stand up and stop sitting on my shoes... that I remember she's six. Not that she acts any older - it's the emotions she projects, it's the room.

Anna reminds me exactly of my cousin’s daughter (in France). That one, Catherine, is a little younger. There hadn't been a girl this...well, girly...frilly...in my immediate acquaintance (or genetic pool) in a very long time. Not one I'd spent this sort of time with, at any rate, in this capacity.
Catherine’s also into princesses. Princess dresses, dolls, coloring books, stories…everything, everything, everything.  It’s what she got at Christmas. And it’s what she pulled me down onto the floor to play with her. And she was running around and ordering me to come after her and didn’t want to leave me (this time, I was staying). We didn’t go outside together – it was frigid, actually – so maybe it didn’t feel all that different, in that respect, from being with Anna (and when I am with Anna, I can't go outside, anyway, for awhile). Who could leave. Who could go. And she (C) isn’t really angry – bossy, yes, commanding, yes – but not angry. Her parents think she’s impossible sometimes. (...as do Anna's). And, gods, imagining her trying to comply with medical treatments without throwing tantrums (that’s one thing we’re working on with Anna…her heart might be better right now, it’d be a shorter stay, maybe fewer medications at some point, if only she’d let people….)
They’re pretty similar, these two. They don’t speak the same language, not verbally, but I know that wouldn’t matter. If C had a hospital room it would look exactly the same. And her mother would stay, too, and leave when I was in there, and sit and talk to me while her daughter ran around the room. We’d do that.
But one is sick and one is not. Anna looks like…well maybe one of those characters in a 19th century novel. One of the little ones with TB, so little, long hair, eyes a little sunken, pale, pale, pale. Those little girls didn’t run around the room and throw things – though probably they did – it just didn’t seem like the thing to write about, at the time. Maybe Beth in Little Women. Maybe the girl in Jane Eyre…what the heck was her name… when she was young. One of the orphans in one of those books, around this age. Fever, fever, burning bright. Consumption. The romantic diseases... I’m reaching for names of books I haven’t read in... a decade and a half? More than that, but not quite two. It’s been awhile.

I don’t think about prognoses until I ask. I know them, I can figure it out, after all. For the most part. But doctors are terrible at this part. Terrible. You always want to think the best. And sometimes that works out. And sometimes there are miracles…(see that). I’ve seen it. And as time goes on, I’ll see more miracles and more not, more things going exactly the way numbers will and more things that are surprising in either direction.

On our team, at this hospital, the kids don’t have just one rare disease, but at least two. The multipliers are staggering. Within a rare disease, they probably have the rarest subtype. That’s what it is to work at a tertiary care hospital (I am, currently).
The interesting thing is I haven’t used Spanish in over a month (this is bad, actually. And, okay, not technically true. I used it very briefly to explain to a patient on neurosurgery that he had not, actually, had another stroke, after the neurosurgeons rushed out of the room. They assumed he understood English in the way he nodded his head, and, after all, getting someone to help talk through that would take more time. If they did take more time…well, I know what the days would be like. At least there are NPs to provide the patient care, later in the day. It becomes sidelined in surgery).

And there is the major, major, part of me that is not a surgeon. At all.

I digress. Medicine, hospital medicine, and the part of the day that is spent on patient care is an entirely different issue…

The Spanish thought was ancillary, perhaps. And maybe not. Each day in medicine feels like a week, and it takes looking at calendars and counting days to realize how little time has passed. I have spent five consecutive days on this team, in pediatrics (we started on Tuesday). And yet…
each day is a week, each week is a month, and each month…well. It’s draining and it is different, completely different, than a lot of other jobs. Because of this bit.  The people bit. And the disparities in healthcare bit – it helps with kids that they’re all eligible for some type of insurance. I'm not as incensed about inequality and unfairness and...it does become a question of ethics... multiple times per day. Not this week.

But why haven’t I pulled out the Spanish dictionary in over a week – why does it live in my bag in the MD charting room, right now, and not in the ever-present one? It’s tertiary care, it’s really really sick kids with really really rare diseases – why not the same percentage of Latino kids as there are in the state, in general? The demographics don’t reflect this city, at all. Particularly in that there are a heck of a lot more Latino kids than white or anything-else-ones. (I guess one of my patients this week was part Latino. Okay. English-speaking parents though. The patient is non-verbal. He's 23 years old. At any rate).
So it’s an issue in accessing care, then. Has to be. In knowing about how to get it, in getting in primary care in the first place and somewhere someone will recognize something and send you on. In the parents knowing about the system, in that being as ever-present in their lives or knowledge base. Haven’t used Spanish yet and I can’t figure out another reason why. (I mention this in socio-economic terms partly because of the numbers, partly because of where I’ve worked before, and partly because … if the patients are monolingual or mostly monolingual Spanish speakers, in general, they’re not upper-middle. And that’s when I need the dictionary). Not all these patients come from middle to upper middle, not by a long shot. But still. Demographically and language-wise, there’s something odd about this hospital.

And Monday I’ll see my angry little girl again, because she’s not leaving soon. I think I’ve been there enough that I’ll be forgiven for not going in on Sunday. Maybe.

And none of this is because I care more than the actual doctors. I have more time. And I’d rather put off the studying to play with the angry little girl… there are other times for that… and other times I need to use for that…I just have more time. And while I can do a lot now (I can be useful! It’s getting better…), I’m just carrying two-four patients (two got discharged today), and I can’t sign orders, and I’m not the first person who gets paged, and the residents have to check in on the patients, too. And while I can and do write notes for all my patients, the notes have to be read over by the interns and residents, co-signed, and posted. Which means that has to happen after I’m done, which means they stay later. 
So the ones who don’t have quite as much time, not nearly, get the finger from Anna when they go in to examine her. It's her favorite finger for the pulse-ox machine, too. The ones who are there more often – like the therapists for various things – don’t get that finger anymore except when she's kidding, and they don’t get things thrown at them..

These are the good parts. And then I too can forget for a bit that she is sick, chronically, and that the rest of them are. That, actually, I'm sitting on the floor but there's a stethoscope around my neck, and the lizard she keeps stealing is a medical tool/toy. She always remembers to give it back, now, and she was worried today that I might lose it in her room.

My angry little girl. Not always so angry.


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