Then at her regularly scheduled appointment with Dr. Applebaum, Tia had continued her antics, crawling all over the examining table in her diaper. She found a particularly dusty shelf and within minutes was covered with dust. Priscilla and Dr. Applebaum dissolved in laughter.
“She’s been well a long time, Dr. Applebaum,” Priscilla remarked after the examination. “Almost three weeks. And she’s getting to be so mischievous—almost a little devil in some ways.”
“Good for her!” Dr. Applebaum approved.
In those three weeks home, Tia had been reasonably healthy, despite a period of general ill-health in the Phillips household. Although she had come down with a cold and an ear infection, for once the infection had not triggered one of her bad episodes. She had also had some loose stools. But the rest of the family had been ill with flu as well. In addition, Priscilla had contracted a case of strep throat. It had not been a good week.
They were all feeling better, finally. Priscilla had suggested to Dr. Applebaum that it was a good sign that Tia hadn’t started an episode after this latest ear infection.
“Maybe Tia’s system is building up some antibodies,” she told him.
“Well, perhaps she’ll just grow out of this. It’s certainly not impossible.”
Steve was working the afternoon shift—three to eleven. That evening Priscilla fed the children dinner, and afterward she put Tia to bed. Around nine, Tia started crying, and Priscilla went to find she had vomited in the bed. She cleaned Tia up and changed the bedding; Tia went back to sleep without trouble.
Soon after, Steve came home. Once again they heard Tia crying and discovered she had vomited again.
“You change the bed,” Priscilla said. “I’ll get her fixed up. I think we’ll have to keep her up a little while, just to make sure she’s all right.”
“Okay,” Steve said. An hour later Tia fell asleep in his arms. “Do you think it’s safe to go to bed?”
Priscilla nodded. Silently, Steve lifted Tia, carrying her through the little hall to her daisy-covered room. He put her down and covered her with a fresh blanket.
“We’d better keep checking on her,” Priscilla said. She knew she would do the checking. Steve slept like the dead.
13
Steve woke to the sound of Priscilla screaming.
“Steve! Steve! My God! My God!”
His feet hit the floor before he could account for their movement. He shot a quick look at the clock. It was nearly four in the morning. In his underpants he ran to Tia’s room.
Priscilla was standing next to Tia’s crib, her hands over her face, her eyes pulled wide. Steve leaned over the bed. The whole bed was drenched with diarrhea and vomit. Tia in her nightclothes lay covered with it. All down one side of her body she was twitching. Her eyes were closed.
“Get something on her!” Priscilla’s voice was wild. “I’m calling the E.R.”
Steve stood for a second watching the twitching—he couldn’t move. Then he picked Tia up, fumbling for a blanket to put over her. Her diarrhea came off on his bare chest. He felt his own vomit rise in his throat. He prayed something without words. Dr. Applebaum’s voice came back to him, playing over in the dead space of his brain where he had put it, not wanting to hear it. “It’s progressive, Mr. Phillips. If we don’t find out what it is, eventually it will kill her.” He had never told Pris. He had never told anyone.
Priscilla was back. “I got them. Dr. Viehweg is on call. He’s going to call me back. Just hold her. I’m going to get dressed.” She sounded almost under control now.
Steve stood holding Tia, feeling her shaking. He squeezed her against him to stop it but it just went on. The phone rang and Priscilla talked into it for a moment before hanging up.
“He’s meeting me there,” she said. “Thank God he’s moved from the city—it won’t take him so long to get there. Come on, put her in the car.”
Still in his underwear, Steve ran into the cold February night and, bending, strapped Tia into her car seat. The boys—he had to find someone to stay with the boys, he thought suddenly.
“Call me! I’ll find a sitter,” he yelled through the closed window at Priscilla. He saw her nod as she jerked the car out of the driveway.
He went back into the house and stood shivering in the living room. All the lights were on. The smell of vomit and diarrhea was strong and he brushed at the patches of them on his chest. Suddenly everything in the room looked wrong to him—the crazy philodendron climbing across the roof beams as though it thought it was in the jungle somewhere; and the raisin tray pictures in orange and yellow with the big space between the slats so the flowers were all broken up and strange; and the photograph of Erik and Jason and Tia that Pris had had taken somewhere—all the kids in pink outfits. Who put little boys in pink denim outfits?
Everything stood out in the room so bright and ugly. So wrong. Steve stood in the center of the living room and shook and shook until he thought the house would fall down around him.
14
In the E.R. Priscilla stood and watched as Dr. Viehweg worked over Tia. The E.R. nurse had started Tia on oxygen immediately, and Viehweg had arrived a few minutes later. Tia was breathing harshly and she was blue and still twitching. She looked unconscious.
Dr. Viehweg pushed fluid through Tia’s central venous line.
“Get me a CBC and serum electrolytes stat,” he said.
“What about blood gases?” the E.R. doctor said.
“No, we’ll wait on that. This is the way she gets during one of her episodes,” Dr. Viehweg said. Tia’s blood was drawn for the blood count and electrolytes, and the results were telephoned back within minutes.
“Christ, her sodium’s at one-ninety-seven! No wonder she’s out,” Dr. Viehweg said.
Priscilla stood closing and unclosing her hands. Tia had never looked like that. But in a while the seizures stopped. Tia appeared calm.
“Is she better?” Priscilla asked Viehweg.
“She seems to be stabilizing. The fluids are helping.”
“But she seems so out of it. Do you think that’s okay?”
“Yes, Mrs. Phillips. She’s been this way before.”
Shortly before seven, Priscilla telephoned Steve. “Dr. Viehweg says she’s stabilizing,” she said. “Get the boys off to school and then come up. By then Sara will be here. She’s on call today and Dr. Viehweg’s getting ready to phone her.”
“Will Tia be all right?”
“Well, she looks more out of it than usual. But they’re treating it like the other episodes,” Priscilla said.
“Okay. I’ll be there as soon as I can.” His voice sounded furry.
Priscilla went back to Tia. She was having another seizure. Suddenly she seemed much worse.
“Should we give her Valium for the seizures? What do you think?” asked the E.R. doctor.
“No, it might suppress her breathing, and her blood pressure’s really down,” Dr. Viehweg answered.
Priscilla watched as they started Tia on medication to raise her pressure. She was still unconscious.
“When will she wake up?” Priscilla asked. No one answered.
15
Sara stopped and put a hand to Tia’s forehead. It was cold and clammy. Tia did not move or respond in any way. Her breathing came slowly and with difficulty. Then suddenly she convulsed all up one side of her body. Sara had expected to see Tia in the midst of a bad episode, but this was a whole other thing. When she had arrived at the E.R. just minutes ago, at not quite eight o clock, Dr. Viehweg’s expression and the white pastiness of Priscilla’s face had told her that.
Tia’s serum sodium was tremendously elevated. Despite the fluids pouring into her, she was dehydrated. And she couldn’t breathe. Sara ordered Valium and Phenobarbital to control the seizures.
“We’ll need blood gases stat and I want her bagged. Get an inhalation therapist down here,” Sara said. Quickly the blood was drawn for the blood gases.
The inhalation therapist arriv
ed and fitted the mask over Tia’s still face. She sat beside the baby and began to squeeze the bag to assist Tia’s breathing. In a moment the blood gases came back from the lab. Tia’s oxygenation was adequate but her ventilation was impaired. God, what was happening? Sara thought. She ordered an immediate chest X ray. Then she walked over to Priscilla. Priscilla came out from where she had been huddling in the corner, her arms extended as if to greet or plead with Sara.
“What’s the matter with her? Why is she convulsing like this? Why does she need that bag?” Priscilla said, the tears beginning to track her white cheeks.
Sara forced a calm response. “Priscilla, Tia’s in very bad shape. This is the worst she’s ever been. I don’t know yet why she’s having a seizure but it may be due to the high level of sodium. The Valium and Phenobarbital should control the seizures. At this point we’re more concerned with her breathing. If an inadequate amount of oxygen is getting to her brain, that can cause convulsions, brain damage, coma. That’s what the blood gases measure: the amounts of oxygen and carbon dioxide in her blood. It tells us whether she needs to be helped to breathe.”
“And that’s what that bag’s for?”
“Yes. The blood gases show that the pO2—the index of the concentration of oxygen in her blood—is okay. But the pCO2, which measures the content of carbon dioxide in the blood, is elevated. That’s why we’re helping her breathe. The chest X ray may show us why she’s having this problem.”
Steve came in then, and Priscilla threw herself into his arms. “I’m so scared, Steve! I’m so scared!” she cried.
Sara swallowed against her own fear. She walked over to where Tia lay and looked down at her. The ventilator bag covered her nose and mouth—her face had disappeared. Where are you, Tia? Come back, she thought. But the X ray didn’t look promising.
It showed a right-side infiltrate in the lung. Tia had inhaled some of her own vomit and that was causing the respiratory failure. And Tia’s breathing was worsening. Her respirations were decreasing and another blood gas analysis showed that the carbon dioxide was building up. The mask and bag weren’t sufficient.
“Call Anesthesiology,” Sara said.
At nine A.M. the bag was replaced by an endotracheal tube. But Sara realized that Tia needed a mechanical respirator, and Kaiser-San Rafael wasn’t equipped with a pediatric machine. She would have to go to San Francisco.
Sara went out to tell Priscilla and Steve, who were waiting outside. They clung to each other as she told them the news.
“We’ll move her as soon as she’s stable and as soon as we can get the special ambulance over here from San Francisco. I’ll go with her,” Sara said. They didn’t ask her how bad it was. They looked at each other and didn’t ask. So she didn’t say anything more.
16
They had moved a child out of room 369 so that Tia could have her own room back, somebody told Priscilla. It felt like home, coming back to San Francisco, she realized. How different this hospital seemed now. It wasn’t like San Rafael, where they had chosen to throw Tia out last Christmas—that was the way Priscilla perceived what had happened. Tia’s condition put too much strain on the staff, Dr. Stein had said during the Christmas Eve meeting. Their hospital wasn’t designed to care for a child as seriously ill as Tia. Priscilla saw that as just an excuse. She believed they had handled Tia fine. It was too much trouble for them; that was the inference she drew. Steve had raged at Stein.
“You want us to take her to San Francisco? What if she’s in shock? You know how she gets!”
“Well, if she’s critically ill, of course you can bring her here,” Dr. Stein had said.
“We’re not goddamned doctors! We shouldn’t have to make that decision about Tia. I’ll call a damned ambulance and charge it to you!” Steve had screamed.
After the meeting, Priscilla’s outlook toward Kaiser-San Rafael changed completely. Although at a subsequent meeting a treatment protocol had been drawn up establishing that in an emergency Tia was to be brought first to San Rafael, Priscilla felt betrayed. Suddenly Kaiser-San Francisco seemed welcoming and friendly, and San Rafael the enemy.
When they brought Tia to San Francisco now, comatose and in deep shock, the staff hurried to set Tia up in her room, hooking her to the mechanical respirator. Mike Applebaum came in immediately to examine her. Sara was on call at San Rafael and had to return there, but she promised to stay in touch. Jim Hutchison had been to the San Rafael E.R. before they had moved Tia—Steve had called him—and he had prayed with them, trying to offer comfort. He was planning to come over to San Francisco later, he told Priscilla.
She wanted friends around her. Tia’s room was filled with equipment and only one person at a time could stay with her.
There was no room even to sit down. So Priscilla and Steve alternated, and when Steve was in there, Priscilla had to sit in the tiny Waiting Room at the end of the ward. She didn’t want to be alone.
Jan and Jim Doudiet arrived—they were close friends from the babysitting co-op. Jan, a nurse, was pregnant with her second child. “Are you sure you ought to be here?” Priscilla asked her after a while.
“Of course, Priscilla. Don’t be silly,” Jan said.
“I need you, Jan. You’ve got so much faith. I need that now.”
“She’ll make it. Prayers can help. I believe that so strongly,” Jan said.
“You know, Tia can breathe on her own,” Priscilla remarked. “The respirator’s just to assist her.”
“That’s good, Priscilla. It’s possible she could come out of it at any time.”
“But they say her condition’s critical. They’ve never said that before.” Priscilla began to weep heavily. Jan put her arms around her and hugged. Bob Hamilton arrived. Like the Doudiets, the Hamiltons were longtime users of the babysitting co-op. The three families exchanged their children all the time, and they were close friends. Cyndy Hamilton was staying with Erik and Jason. Priscilla and Steve would be here all night.
Dr. Diamond came by. He had been Tia’s principal doctor when she had first been hospitalized in San Francisco the previous April. He looked in on Tia and then stopped to talk with Priscilla.
“How is she?” Priscilla asked.
“She’s very sick. Do you understand how sick she is?” he said.
“Well, I’m worried about brain damage when she comes out of it. You know she’s stopped having seizures, but she’s been making this strange noise and arching in a way they say indicates maybe she has brain damage.” Priscilla was crying again, the tears a steady unnoticed stream.
“That’s quite likely,” Diamond agreed soberly. “But these things are unpredictable.”
Jim Hutchison returned. Priscilla didn’t have to explain anything to him. They stood with their arms around each other and he prayed with them. From time to time a staff member stopped to offer reassurance.
In a while Nancy Dacus came to the hospital. Her daughter was Erik’s age and Nancy had founded the babysitting co-op with Priscilla in 1972. She was also a member of Aldersgate, and was involved with the American Association of University Women (AAUW) with Priscilla. And she had lost an infant daughter in 1973, from an unknown virus. She held Priscilla, and then Steve.
“I think you need something to eat,” she said to Priscilla.
“No, you go. Take Steve,” Priscilla said.
At seven that evening, Priscilla and Steve sat silently in the Waiting Room with the Doudiets. Suddenly the hospital P. A. system came to life, calling a Code Blue in pediatrics. Someone had stopped breathing. At once Steve stiffened.
“It’s Tia,” he said.
“No, no,” Priscilla said calmly. “It’s not.” But then she saw Dr. Coolman run by.
“I’m going to check,” Steve said. He was out and back in a minute.
“It is! It is Tia! They’re all standing around her bed working on her. Oh, God!”
Priscilla rushed to Tia’s room. It was crowded with nurses and doctors. After a few minutes Lou Guill, the re
sident in charge, came out to her.
“It’s all right, Priscilla. What happened is that periodically the nurse has to take Tia off the respirator and suction her, and when she did it this time, Tia stopped breathing. We’ve got her going again. But I want you to know that she can’t breathe on her own anymore.”
Priscilla began to cry. “And her heart wouldn’t beat without that drug you’ve got her on, right?” she asked. Dr. Guill nodded her head.
“Yes, she needs Isoprel to maintain blood pressure,” she agreed.
“Can I go in now?”
“Yes, of course.”
Priscilla stood by Tia’s bed. Tia was hooked up to an IV, a heart monitor, and a catheter. Her mouth was distorted by the ungainly tube exiting from her trachea. Priscilla picked up Tia’s hand. It was entirely relaxed and cold. Shakily, Priscilla put her own hand to her face. One of the doctors in the room, a woman Priscilla didn’t know by name, turned to her and spoke gently.
“We almost lost her. She’s okay now but I’m not sure we’ll get her through the night.” Priscilla didn’t answer. “So you might want to sit with her,” the doctor went on.
“Yes.” Priscilla looked around helplessly.
“Here, I’ll bring you a stool.”
“Lou?” Priscilla addressed Dr. Guill.
“Yes?”
“I want Sara here. I know it’s late but—”
“I’ll call her. There’s a phone right here. You can speak to her yourself.” When Sara came on the line, Priscilla took the phone.
“They said she might not make it through the night,” Priscilla sobbed. “I need you—please come.”
“I’ll be right there.”
When Sara arrived, she walked straight to Priscilla, taking her in her arms. Priscilla broke into fresh tears and looking up saw that Sara was crying too.
“I’m sorry. I need you to be here,” Priscilla sobbed.
“I know. It’s all right. I know.”
Sara stayed in the room, occasionally leaning over to stroke Tia’s face. At one point she turned to Priscilla.
“You do understand how sick she is, don’t you?”
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