Right now he had Christmas to think about, only four days away. The church would be crowded, the children jittery with excitement as they gathered for the service. He smiled at the image. In a few years little Tia would be among them. He liked to think of the children he baptized taking their places in the Christian community, being confirmed, and then finally becoming members themselves someday. He doubted he would be around even to confirm Tia, as it was unusual for a Methodist minister to remain above five years with any one congregation. Still, he had started her on her way in her Christian life. She would be all right.
5
Evelyn Callas finished her examination of the ten-month-old Asian infant. Gross examination revealed a normally developing, well-nourished female child. Her rectal temperature of 99.6 was normal. Evelyn turned to the mother.
“Now, Mrs. Phillips, Dr. Shimoda called me a few minutes ago and gave me a brief history on Tia. Can you tell me what prompted you to bring her into E.R. tonight?”
“Well, she’s been sick really ever since we got her from Korea four months ago. She’s had recurrent otitis media and urinary tract infections, and a persistent rash. Once she had an abscess on her thigh. She’s been on antibiotics practically the whole time, and she had some diarrhea from that. She has a urinary tract infection right now, and Sara has been treating her with different types of antibiotics—Ampicillin and Gantrisin and Furadantin. And she also still has an ear infection.”
“And what happened today?”
“Oh, I brought her into the clinic for her regular follow-up appointment. I had told Sara the last time we saw her about Tia’s violent vomiting and diarrhea. Then today I told her that Tia’s been vomiting the whole week. Yesterday she had some fever, and she’s been real cranky—not like herself all this past week. Today she refused her lunch and dinner and she wouldn’t take her bottle. And then at five o’clock she started crying loudly, and when I went in to her she stopped crying all of a sudden and then kind of stared into space.”
“Did she roll her eyes up? Did she change her position at all?”
“No. She didn’t jerk or anything. She just looked blank. But then about a half an hour later she did it again.”
“What happened?”
“Well, she just stopped crying all of a sudden, like before, and looked off into space.”
“Was she pale or flushed?”
“Kind of flushed. The first time she was pale.”
“And then what happened?” asked Evelyn.
“Well, she seemed pretty much okay until about nine-thirty tonight. Tia has a jump chair and I’d put it in the kitchen and she was holding her bottle, and suddenly she fell back and dropped the bottle. I picked her up and she seemed all right. But then she did it again. So I immediately called Sara—Dr. Shimoda—at home, and she said it sounds like a seizure and to bring her in.”
“How long did this last staring episode last?”
“Oh, about a minute—maybe half a minute.”
“Did she jerk or roll up her eyes? Did she seem to be holding her breath?”
“No. It was exactly like before—sort of staring into space. But her arms did fall away from her sides when she dropped her bottle.”
Evelyn made some notes in the baby’s chart. Then she glanced back through the outpatient history, quickly scanning the past entries. This child had a very thick chart considering she had only been a patient since November, she thought. Here it was the second of March, and Tia had already been into the clinic—Evelyn counted quickly—twenty-five times. Persistent low-grade infections—mostly ears and urinary tract—both of which could prove difficult to cure. Well, maybe they could sneak in a bilateral myringotomy while she was here to drain some of the fluid that was causing the otitis media. They’d have to admit her for the seizure activity, she decided. Sara wanted her admitted and Evelyn agreed. The baby would need both an ENT and neurology consult.
“Mrs. Phillips, I think we’d better admit Tia for observation,” Evelyn said.
“Yes. Sara indicated that you’d probably want to do that.”
“We’ll have the pediatric neurologist, Dr. Leider, check on the seizure activity. He roves around the different Kaiser facilities and is here on Thursdays. And we’ll have a specialist from Ear, Nose, and Throat talk with you. He may want to recommend a myringotomy and PE tubes, a very minor surgical procedure where tiny plastic tubes are inserted through the eardrums to drain off the fluid back there and keep the canals open so infections won’t keep developing. It’s nothing to worry about at all. We’ll try to get all this straightened out at one time and it shouldn’t take too long.”
“Will I be able to stay with her?”
“We do encourage the parents to stay with the children as much as possible. And if there’s room up there on the ward, you can sleep over. I think we’re pretty crowded up there tonight. But we do like to encourage the parents to help with as much care as they feel comfortable with. It seems to make it much easier on the kids.”
“Yes, I know. I’m a social worker, and I know about what happens to institutionalized children. You do think Tia will be all right?”
“I certainly hope so. There’s no reason to be alarmed yet, Mrs. Phillips. Tia really looks quite well. Now, you’ll need to take this to the admissions office. Then we’ll get Tia squared away in a bed on the pediatrics ward.”
Evelyn quickly arranged for the admission of Tia Phillips. She seemed a sweet child, she thought. Possible encephalitis, of course. Leider would want to do a lumbar puncture. And the mother was a sensible sort. She had given a very clear history. It made everything much easier when the parents were clear on what had happened and could describe it accurately. In Pediatrics, especially, you had to rely so much on what the parents told you. It certainly helped if they knew what they were talking about, and this mother seemed sharp.
Evelyn could go home now. She was on call the rest of the night but she didn’t have to stay at the hospital: they would phone her if they needed her.
Before she left, she took the elevator upstairs for a final check on Tia Phillips. Because the ward was so crowded, the nurses had put her crib in the hall, but they’d find her a room tomorrow. Evelyn could see that her patient was awake and taking her bottle, so she didn’t go over. The parents were there with her—Mrs. Phillips and a big bulky man with her who must be the father. Evelyn waved at the nurse and then stepped back into the elevator. The baby’s case did not seem serious, Evelyn thought. It was likely that Tia Phillips’s hospital stay would be a short one.
6
Priscilla smoothed Tia’s thin black hair one more time and arranged her new pink and white party dress for the picture. Then she took some of the toys Tia had received for her birthday—the shape sorter and the Fisher-Price floating family and some others—and placed them around Tia’s feet.
“Smile, Tia!” And she did, grinning her open-mouthed little smile as the picture was snapped. Priscilla considered this a major occasion, and she had invited Tia’s social worker from Catholic Social Service, all the other patients on the ward, the doctors and the nurses, and of course Steve and Erik and Jason and her own mother. Tia was having a good day, showing off for everybody, smiling and waving and saying hi, Priscilla noted proudly. Everybody commented on what a cute child Tia was, how normal she acted. “It’s a real tribute to you, Priscilla,” somebody said. And that was true, she felt, because in spite of everything, Tia
was
a normal child; she was a happy child, even after two straight months of hospitalizations—first in Kaiser-San Rafael, then here in Kaiser-San Francisco, then back to San Rafael, now here again.
Dr. Applebaum came up to Priscilla, smiling widely under his large black mustache. She liked Mike. He was young and cheerful and very smart, and he explained things to her.
“Oh, Dr. Applebaum, doesn’t she look cute?”
“She sure does. One year old today! How’s the party been going?”
“Just fine. There’s her cake over there. Have you had a piece yet?”
“No, but I’ll make it over there in a minute.”
“I sure wish Tia could have a little taste—it’s
her
birthday, after all!” said Priscilla wistfully. It was impossible, of course, she knew that. Tia hadn’t had anything by mouth since the middle of April and it was already May seventh.
“She’ll just have to save it all up for her second birthday!” Dr. Applebaum said, smiling at her. “We’ll get her on solids one of these days, Mrs. Phillips, you’ll see.”
“Well, I sure hope so, Dr. Applebaum. Sometimes I think she’ll never eat again, never get out of the hospital.” Tears welled up and threatened to spill. “You know in the beginning it all just seemed like nothing—like just a matter of a few days. And she hasn’t been home since.”
“Yes, but at the beginning Dr. Shimoda thought she was dealing with a neurological problem, and with persistent urinary tract and ear infections, as I remember.”
“That’s right. How I wish it were that simple,” said Priscilla, her hand brushing at the tears, remembering. Tia’s first bad stooling and vomiting episode hadn’t begun till March seventh, five days after Tia’s admission by Dr. Callas.
Since her arrival from Korea, Tia’s stools had normally been loose, but nothing like on that occasion. The fluid had just poured out of her. She had been so lethargic that Priscilla felt as though she were holding a rag doll. Sara diagnosed viral gastroenteritis. She ordered a set of serum electrolytes, and the results came back high in sodium.
“That’s a direct result of the diarrhea,” Sara explained. “Water is drawing sodium out of the cells as it passes through the digestive tract, causing the concentration of sodium in the cells to rise. Diarrhea typically causes electrolyte imbalances,” she said. “We have to be very careful about replacing not only all the fluid Tia is losing in her diarrhea, but also the proper amounts of each electrolyte—the sodium, potassium, and chloride—because diarrhea and vomiting can lead to dehydration; that can cause severe problems in children.”
The next day they started the first IV on Tia. She was losing too much fluid through the diarrhea to be replaced orally. At that time Priscilla began to keep notes on Tia’s treatment—something she was subsequently to regret. By then Priscilla was familiar with the medical terminology, and she was given access to Tia’s chart whenever she wanted. She had a vague idea after a while—and she always maintained that Debby Roof and some of the other nurses had suggested it—of writing up Tia’s story for a magazine. In any case, she didn’t want to forget all the treatment. By then there had been a considerable amount.
Her own life was in a shambles. Gradually she realized that she was simply going to have to reorganize things, that Tia was not coming home. She would have to make the time to be with Tia. She was working three-quarters time now, but the hours were flexible. Sometimes she cheated a little when reporting her hours. It was the only way she could manage. On March twelfth—ten days after Tia’s admission—Priscilla wrote in her journal:
Friday—Neutramagen [sic], rice cereal in P.M., to be discharged on Saturday. Then late P.M. diarrhea and vomiting again, screaming, cramping, fever of 102.2, Dr. Arnhold on, did blood culture, etc.
Saturday brought deterioration, not discharge. Priscilla noted:
Fever of 103.4, discharge delayed until Sunday. Seemed better, then early P.M. vomiting began, then severe diarrhea—by 5:00 P.M. had put out over 1,000 cc stool plus continued vomiting. Dr. Carte started IV. Weight down to 6.6 kg, lethargic, pale.
On Sunday:
Called Sara at home re my concerns—she’s to talk to Dr. M. Applebaum in S.F. on Monday.
Sara consulted Dr. Applebaum on March fifteenth. He agreed with Sara that the most probable cause of Tia’s diarrhea was irritation of the intestinal lining.
“Continue the IV,” he recommended. “Try a little more sugar in the solution and increase the rate. Her nutritional status is marginal. I know you’ve checked for reducing substances, but better do it again. If she’s not absorbing even simple sugars, that could be the problem. We may have to go to peripheral hyperalimentation.”
“What’s that?” Priscilla asked.
“Well, the only way we can give Tia’s bowel enough time to heal is to prevent it from working. So we don’t feed it. Now obviously the body needs food and fluid and that’s the purpose of the IV. But the problem with maintaining a child on IV over long periods of time is that the sugar in the standard IV solution does not provide protein. And you need protein to build tissues. Now there are solutions that exist which do provide not only sugar but amino acids—or protein—and fats. And when we talk about hyperalimentation, we mean providing enough nutrition by vein—in predigested solution form—for a child to grow on. Tia needs that. Peripheral simply means by way of the peripheral veins—the ones that run around the outside, or periphery, of the body. Basically, they’re the ones you can see. And the advantage of all this is that we can bypass the digestive tract entirely by using the IV, and that gives the bowel time to rest from its normal digestive function and repair itself.”
“I see,” said Priscilla. Hyperalimentation was then initiated. Sometimes they permitted Tia a little diluted formula, too, because they were having trouble locating peripheral veins, and she was very hungry. But every time they fed her, it seemed her diarrhea started again.
Then on March twenty-second, twenty days after her admission, Tia had her first cut-down, in her right ankle. But within a few days the site became infected and the cut-down had to be removed. Sara ordered penicillin and a new cut-down in the other leg, and after another consultation with Dr. Applebaum, made another decision.
“We’re going to make Tia NPO for ten days,” Sara said.
“My God, that seems so long! Why?” asked Priscilla.
“The problem may be that her bowel still hasn’t had enough time to heal. If she improves we can give her feedings through an NG, drop by drop.”
“Why not a bottle?”