Then finally, yesterday morning, the urology attending showed up. By the time we started work rounds on the floor at eight o’clock, Ricky was on his way to the operating room. I saw him before he left; he looked terrible. His belly and his right leg were tense and swollen. It turned out he had so much urine in his abdomen that some of it had worked its way down into his leg. It was a real mess. He was in the OR four or five hours. First they had to clean out all that urine. Then they had to reattach the ureter to the kidney and make sure it was working okay. He spent another three hours in the recovery room and he didn’t get back to the ward until after four in the afternoon. The renal fellow and I were with him all night. Plus I had four new admissions to work up, nothing serious, just more pre-ops for tomorrow. It was far and away the worst night for me at University Hospital, and now I’m exhausted. I couldn’t even eat dinner. Larry fed the baby and took her out for a walk and I’ve just been lying here, not able to get out of bed.
I don’t think I’ve ever seen anybody as angry as Ricky’s mother. Most of the parents at University Hospital are weird. They’re very private, and they protect their privacy and that of their children. I guess it’s understandable, since so many of them are chronically sick and wind up spending so much time in the hospital with all these doctors and nurses and medical students and other people constantly going in and out of their rooms. So they give you a really hard time when you have to do something and it makes you feel as if you’re intruding into their space. Ricky’s mother is different. She’s friendly and she likes to have company in the room. But she’s been seething since she found out the urologist refused to come in Sunday night. She’s sure the delay in getting Ricky to the operating room is going to cause permanent damage to the kidney, her kidney, the only kidney she can give to her son. Dr. White told her he didn’t know what effect this would have, that only after everything’s back to normal will we be able to figure out what’s what. She was still livid when I left the hospital this afternoon. I hope everything works out all right. But in the meantime, Ricky’s on about a hundred medications, he’s still NPO, and he’s still really sick. There is at least one good sign: His BUN and creatinine from this afternoon were down.
I can’t stay awake any longer. I’m going to sleep.
Monday, August 19, 1985
It’s been a good week. I’ve been getting sleep, I’ve been coming home early, I’ve been spending time with Sarah and Larry. I can’t complain.
The other interns on the team seem depressed, and I can understand why. There just aren’t any normal children on this ward. Very few of these patients wind up being normal at any time during their lives. There’s almost no hope here. On rounds yesterday, Janet said there were two kinds of patients at University Hospital: the ones who cry when you stick them for blood and the ones who don’t. She said the ones who cry are bad because they make you feel guilty when you stick them. But the ones who don’t cry are much worse because they’re the ones who know that crying isn’t going to do them any good.
I know what she meant and I know that if I were to hang around the hospital as much as she and Margaret do, I’d be depressed, too. But I can escape; I’ve got Sarah to run home to. And that makes everything a lot better.
Here’s an example of what we have coming into this place: When I was on last Thursday, I got a five-year-old girl with intractable seizures who was coming in to have her anticonvulsant medication manipulated. She had metachromatic leukodystrophy [a rare inborn error of metabolism caused by deficiency of the enzyme arylsulfatase; the disease leads to severe neurological abnormalities]. Metachromatic leukodystrophy: You know how many of those there are in the world? Maybe a dozen. And one of them comes waltzing into University Hospital to have her seizure medication changed. She’s still on the ward. She’s on five separate anticonvulsants and we’re raising one and lowering another. So far I haven’t seen any real change in her. She could wind up staying in the hospital for months.
Her story’s frightening. She was completely normal for the first year and a half of her life, and then her mother noticed she was getting clumsy. She started falling down a lot and losing her balance. She took her from doctor to doctor until she saw Dr. Rustin [a pediatric neurology attending] who made the diagnosis immediately. And now she’s a GORK [an acronym for “God only really knows”] with an intractable seizure disorder.
The first thing I thought about when the mother told me the story was, Can something like that happen to Sarah? I mean, she seems completely normal now, but who knows what might happen next year or next month or next week? Who knows? Thinking about things like this can drive me crazy! I find myself doing it a lot. Every time I admit someone with something strange I think, Can Sarah get this? It usually doesn’t stay with me for long, I can shake it pretty fast, but when it happens, it’s like a wave of terror passing through me. I don’t even want to think about it.