At the time I resented his callousness, though when I think of it now I doubt it was that; I think he was just better at hiding his feelings than I was.
There were no white cells in the spinal fluid, and the smear was negative for bacteria. We kept on with the IV antibiotics and talked about taking out the central venous pressure.
“I don’t know,” McMillan said. “We should get it out soon. It’s a source of infection. But then—”
“Sometimes she looks pretty good,” I ventured.
“Better keep it in,” he said.
At first I refused to accept the implication of the spinal tap. I told myself we didn’t actually know how bad the bleed was, what areas of the brain had been irreversibly injured and which ones might come back after the bleeding and swelling subsided. There had been cases of recovery after intracranial hemorrhages. We’d have to wait and see.
That afternoon we got an EEG and it showed a diffuse, markedly abnormal pattern, but I still kept up my hope. Even unconscious Mary was definitely looking better. Little by little the color was coming back to her cheeks. It takes time, I thought.
Two days later, we did a second tap. I didn’t ask McMillan if he had talked with Prader. I assumed he had.
The spinal fluid was a little clearer, but not much. Reluctantly I had to face the fact that Mary’s skin was not her brain, that unlike a skin cell once a brain cell was dead it was dead forever. Yet I continued to grasp at any straw of improvement. And there were some. Her vital signs stabilized, the cardiac monitor began to show normal patterns, and her respirations, though weak, were adequate.
But when we took the catheter out of her bladder she didn’t void, and throughout the rest of the day her bladder, like a balloon, began growing till it filled the whole lower part of her abdomen. We had to catheterize her again. There was no response from her even to the pain of the catheter being put back. She lay there unmoving, while I poked and pulled.
A short while afterwards Mrs. Berquam came on the ward. When she caught sight of me she tried to smile, but her smile quickly faded, and as she approached I could see how exhausted she looked, how drained. Her makeup, always so precise and understated, that day seemed a kind of afterthought that only accentuated the dark hollows under her eyes.
She knew about the taps, which surprised me since McMillan had not telephoned. “Better to leave things alone and not call,” he said. At the time I thought Chris must have called her, or Mrs. Gowan; later I learned it was Prader.
“Mary’s the same,” I said, and added to sound encouraging, “her spinal fluid is clearing though.” I was about to explain what the clearing could mean when she stopped me.
“Can I see her?” she asked.
I said, “Of course,” but she hesitated a moment and I felt she was fearful.
“Mary really looks better,” I said. “Honest. She’s still unconscious, but at times she’s almost awake.”
Mrs. Berquam sat by her child’s bed most of the afternoon. Several times I looked in on her but she sat there as unmoving as the patient. Once I thought I heard her talking softly to Mary but I couldn’t be sure. The room was darkening when I finally joined her to talk about her daughter. I was about to turn on the light when I thought better of it and went over to the foot of the bed.
For a while there was silence between us and then I heard Mrs. Berquam remark quietly, “This isn’t a real life, is it?” Suddenly I understood it was not hope she wanted, that at times hope was not enough. Such a thought had never occurred to me before, but it has remained with me ever since.
“No, it is not a real life,” I said.
“Yet she can live like this.”
“Yes. We can keep feeding her IV and giving her medications.”
Mrs. Berquam looked at her daughter sadly. “She doesn’t even know I’m here.”
“No,” I said, knowing I was shutting another door on her.
“Then maybe—I mean, why shouldn’t I go home? I have other things to do,” she added guiltily. “My husband. I have other children—”
“I think you should go home,” I said.
Mrs. Berquam rose slowly from her chair, cramped by hours of sitting in the same position, and as I watched her get stiffly to her feet I thought, sooner or later, for every dying child, somebody has to take the responsibility of telling the parents the only thing left for them to do is to go home.
22
ANOTHER DAY, AND LANG blew his stack. “That sonofabitch!” he swore, talking about a Mr. Bera, the father of one of his patients. “He wants to know if I’m sure penicillin will work. If we shouldn’t try something more powerful. If I’m sure! A fucken cab driver asking me about penicillin.”
He was so angry he even said it in front of two aides. Not that everybody working in the hospital didn’t already know what was happening on 402. It was the gossip of every ward. The other house staffs were cautious about openly discussing the situation with us; some even seemed to go out of their way to avoid mentioning it. But apparently they began to act differently on their own wards. We heard that the other interns and residents were making an effort to change things, taking longer with their interviews, explaining in some cases at great length the problems of the hospital system even if they personally didn’t consider them to be deficiencies at all, reminding the parents of new patients that they were always available if anything went wrong. They might have agreed with us and been sympathetic, but they acted as if what was happening on 402 was contagious and might spread.
The next day Lang exploded. He had been on call the whole night taking care of a new diabetic in coma. In the morning he’d taken a shower to wake up but when he got to rounds it was plain he was all in. Still, he’d managed to draw all his bloods before going downstairs to get some coffee. It was when he came back and was reexamining the Bera child and the father began again questioning him about adding another drug to the treatment that he blew up. According to Mrs. Gowan he told Bera that if he didn’t like the care his son was getting or felt it wasn’t the best available he could goddamn well just leave and take his kid somewhere else.
I was down in the lab at the time checking some urine cultures. When I came back I found the normally even-tempered Mrs. Gowan fuming.
“What’s wrong?” I said.
She had picked up the phone but now she slammed it down again. I had never seen her so angry.
“I really should,” she said.
“Should what?”
“Some of you—” she said bitingly. “Honestly, sometimes I wonder who you think you are—Don’t look so innocent. You know what I’m talking about. Now Mr. Bera wants to sign a complaint against Lang. I should let him do it, too. I still have a mind to call Dr. Prader and get Lang kicked off the ward.” She told me what had happened.
“Cool it,” I said. “Maybe Lang shouldn’t have said what he did. But he’s been up all night—”
“Don’t give me that stuff. You don’t fly off the handle just because you’re tired.”
“You sure that’s all there is?” I said. “It’s just Bera?—”
“What do you mean?” she asked, suddenly nervous, it seemed to me, which was as unusual for Mrs. Gowan as losing her temper was. “You just take care of your friend. I’ll take care of Mr. Bera.”
Nothing came of the whole thing, but it did raise the tension on the ward a degree higher. It was the surgeons, though, who provided the proverbial straw, changing the last bit of provisional acceptance that some of the parents still felt into overt distrust.
We had admitted a child with ulcerative colitis, a miserable, wasted kid with chronic bloody diarrhea, who hadn’t responded to steroid therapy or enemas. At a combined surgical and pediatric conference the decision was made to remove his colon and do an ileostomy. Naturally, the parents weren’t happy about it. The Thompsons were overprotective to begin with, and they hated the idea of their child for the rest of his life having to collect his stool in a bag clipped to his side. Eventually we pre
vailed after explaining at length that without the colectomy he would continue to bleed, to be malnourished, to have fevers, to be weak and irritable, and in the end the ulcerative colon itself, if not removed, would become cancerous and have to be removed anyway.
So the operation was scheduled, the permits were signed, and the patient was being readied for surgery the next morning, when the parents had second thoughts. They called me into their son’s room, said they’d been talking to other parents and now they had some doubts about the necessity of surgery. I tried to convince them it had to be done; I went over the whole bit all over again, I assured them that after the operation they would have a happier child, but they insisted on seeing the surgeon.
I called Barmeister, the chief resident on the pediatric surgery service; he was the one who had initially talked to them about the operation and would be doing the surgery. He was in the OR and I left a message for him to call me. While we waited, the parents were getting more and more agitated. I kept telling them that Barmeister was busy but I could feel a head of steam building up and I called the paging operator again to tell Barmeister it was important. He called back a little after seven.
“They’re having second thoughts,” I said.
“The permits are signed,” he said. “He’s on schedule,” as if that ended any further discussion.
“But they still want to talk to you.”
“Can’t you talk to them?” he said, testily.
“They want you.”
“Damn it, I’m busy.”
“So am I. They want to see you. You’re doing the surgery, remember? Not me.”
“Can’t you control the patients on your own ward?” He sounded as disgusted as I was annoyed.
“When can I tell them you’ll be here?” I said, ignoring his comment. “It’s almost the end of visiting hours.”
“When I’m free,” he said, slamming down the phone.
I was pretty sore, but I tried not to show it. I told the parents that Barmeister had an emergency admission and would be further delayed, but they could stay after hours until he came.
An hour later I saw Wagner, a second year resident on pediatric surgery, come on the ward, and I went to stop him before he reached the Thompsons.
“Look, Bill,” I said, “it would take too long to explain, but they don’t want you.”
“Barmeister told me to talk to them.”
“I know, but we’ve been having a bit of a problem up here, and you’re not going to be of help.”
Wagner shrugged. “Barmeister’s not going to like this,” he said.
Barmeister came up a few minutes later. He didn’t even look at me, just walked right past me into the Thompsons’ room. I guess he tried to bowl them over, but it didn’t work. After staying in the room for quite some time he left looking disgusted, with the Thompsons following him out. From where I was sitting in the doctors’ station I could see Handelman approaching from the other end of the corridor.
Barmeister stopped by the station. “It’s up to you,” he said brusquely. “I’ve told you what you could expect. If you want to accept the responsibility that’s OK with me. But he’ll still have to be operated on sooner or later, and now is the best time. He’s as healthy as he’ll ever be.”
“That’s not the point, is it?” I heard Handelman say. He had joined the Thompsons and was standing close by, listening.
Barmeister swung around, surprised. “Who are you?” he said.
“A friend,” Handelman said.
“Well, this is between these parents and myself.”
“A little one-sided, isn’t it?”
“We want him here,” Thompson said.
Evidently nothing like this had ever happened to Barmeister before. He looked simply amazed as Handelman questioned him now.
“What are the chances of their son’s colon becoming cancerous. And at what age? When you take out that colon it’s forever, you know. Isn’t there any new research being done now that might be applicable in the next five or ten years? I mean research that would cure their son and still allow him to keep his colon and not have to use a bag to collect his feces for the next forty years of his life?”
Barmeister must have felt himself cornered. He looked from one to the other, intermittently startled, uncomfortable and angry.
I knew what he was feeling: what the hell’s going on here? Parents questioning him? Asserting themselves? Giving him advice? It was simply unheard of.
All throughout training—surgeons and physicians alike—patients had been paraded before us as specimens. “And now a diabetic—Be sure to check her eyes to see the retinal degeneration—You’ll soon be seeing an interesting case of sickle cell anemia—There are four types of hydrocephalus in infants; the one that will be presented today is of the obstructive type—”
At conferences patients would sit nervous and humble, waiting for their turn. In clinics they were presented half naked, in closed little rooms where instructors pointed out this or that without a thought of ever mentioning what the patient might be feeling about his illness, or even his name. The patients were not there to ask questions or, in fact, to speak at all. No wonder any sign of a patient or parent asserting himself was viewed by us at best with suspicion, and at worst with outright anger.
In any event, Barmeister left without bothering to answer Handelman. The child was not operated on; Barmeister called the staff man and they decided to cancel the procedure.
I’d like to think it was not a matter of pique, or punishment. Whatever it was, Barmeister and the staff surgeon hid behind the argument that you don’t operate and make yourself legally responsible without authorization and complete agreement of the patient or the patient’s representative. But at the time I was angry. As I told McMillan: “The Thompsons were close to agreeing. All they wanted was a little reassurance. There was no reason for Barmeister blowing it the way he did. None.”
“Don’t worry,” McMillan said.
“But things are getting worse.”
“No matter. It will end.”
“You sound so sure.”
“I’m not pleased with it, but it’ll burn itself out. We do a good job. In the end, that’s what counts.”
“And meanwhile, in the short term?” I said. “I mean like the next two weeks. Till I get off this damn ward.”
“Patients come and go,” McMillan said. “There’s no real constituency. There never is among the ill, and never will be.”
The canceling of the operation and the flap it caused among the surgeons brought us a visit from most of the full-time pediatric staff. The professors in the department, like everybody else in the hospital, must have known what was happening on 402, but it took the cancellation of Thompson’s surgery with the disruption in the OR schedule, and the complaints about it from the surgical staff, to bring them onto the ward.
“Showing the flag,” Lang called it. “You think they’d remind the parents they were only hurting themselves,” he said. “It’s their own kids who will suffer. Start changing everything for everybody and it’s going to be a mess. Nobody will know what the hell is happening or what to expect. They’re interfering with their own kids’ best interests.”
Showing the flag was all it was. I could see now that McMillan had some justification for his complaint about the professors. They were faced with a situation they couldn’t handle—a bit more of the whole man than they were used to.
With the same display of concerned disinterest that allowed other members of the house staff to grumble about the parents on our ward while they changed their attitude toward the parents on theirs, the professors walked around in their starched white coats, looked at a few charts, talked with some of the parents and joked with others—and blamed us.
A few settled for just strutting and disappearing, as if their appearance by itself would set everything right; others were obviously annoyed that they had to come down at all. Most let us know they felt the problem on 402 was our fault, tha
t we had handled everything wrong, and that if we hadn’t everything would be as right as it had always been. I was surprised at how vehement some of them were about this.
McMillan stood his ground. “The parents aren’t altogether wrong,” he said. “Give us better staffing, more nurses, more doctors; cut down the waiting; let’s have better lab services, and surgeons who come by when they say they will, and more time to spend with patients. Then maybe things will get better.”
Unlike the other professors, Prader tried to do something about the situation; at least he didn’t merely come by and then disappear. He asked McMillan to name those parents who were causing the most trouble. He was as cold as I had ever seen him; I thought any other resident might well have crumbled under that gaze, but McMillan calmly listed those parents he felt were most involved.
I dismissed Prader’s concern as simply his usual direct way of attacking a problem—any problem.
There was no mistaking the look on his face, though, when he came out of Mary’s room. He was angry. At the same time he was surprisingly defensive, almost cautious with me.
“Where’s Dr. McMillan?” he asked.
“He’s gone down to a conference,” I said.
“Has she responded at all?”
“No, sir. But her vital signs are stable.”
“What about her EEG?”
“It’s diffusely abnormal.”
“And the neurologist’s interpretation?”
I hesitated. “Diffuse brain damage—But—”
“And your plans?”
“Mine?”
“Yes, yours. You’re taking care of her, aren’t you? You and Dr. McMillan.”
“Yes, sir.”
“Then you do have a plan? Or are you just going to handle things as they come along?”
“Support her,” I said.
“And for how long?” Prader said, staring me down.
“I’m afraid I don’t understand.”
“How long are you going to keep supporting her? A week? A month?”
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