“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?”
“Because with a bottle you get what we call a bolus—or bulk—landing all at one time in the stomach, and it appears that Tia’s digestive tract can’t handle that. So we’ll keep her going on the NG and IV.”
“I understand,” Priscilla said.
Dr. Applebaum returned for another consultation. He told Priscilla that there were further tests to be done. But none showed anything, and Tia still remained sick.
On March thirtieth, Sara found a blood clot at the site of Tia’s second cut-down, mandating its removal. Only one site remained. They tried a scalp vein, but the needle infiltrated, pushing through the wall of the vein and pouring the fluid into the space outside the vein where it was ineffective.
“We’re going to transfer her to San Francisco,” Sara told Priscilla on April first. “Her situation has become a little precarious and she needs a full-time house staff. We can’t provide that here. She will go in an ambulance—you can ride with her. It will be all right. Now don’t cry—”
But Priscilla burst into tears. Later she wrote in her journal:
Thursday—NPO—hyperal. Intralipids. Left leg began showing signs of vein irritation—Dr. Arnhold decided cut-down must come out. Sara over in P.M. (day off), ordered move to city because only one vein in hand left—Ambulance to city 4 P.M.—Dr. Diamond started IV. Very upsetting move.
In San Francisco, Tia improved almost immediately. But for Priscilla it was a difficult time. She didn’t know anyone but Dr. Applebaum, and he wasn’t around much. The San Francisco pediatric ward was entirely different—much noisier and busier than she was used to. It was the first time Tia had been treated by interns and residents. Everything was done differently; even the machines were unfamiliar. The hospital was old and big and unfriendly. It needed paint. Parking was impossible. The hospital was thirty miles from Terra Linda, and Priscilla could not dash home as she was used to. The pace at Kaiser-San Francisco was so accelerated that no one stopped to talk with Priscilla. She was miserable. But after a week’s stay in San Francisco, Tia was much improved.
On Wednesday, April seventh, Priscilla jotted down in her notebook:
NG feedings—full strength Vivonex and proper amount—I was upset and requested move to San Rafael—agreed to return her on 4/8.
But after the transfer, the diarrhea resumed almost immediately. Two years later many people looked at this information and wondered about it. It would seem damning that Priscilla’s unhappiness in San Francisco coincided with Tia’s improvement and that her transf
er back to familiar territory was followed immediately by recurring symptoms. Tia had a bad episode on April tenth in which she lost two and a half pounds, plunging her weight to thirteen and a half pounds. Her IV infiltrated again. Her acetone level soared.
“What does that mean?” Priscilla asked Sara.
“It means she’s not getting enough nutrition—even with the hyperalimentation.”
“You mean she’s starving?”
Sara hesitated. “Yes,” she said.
“Oh, God.” Priscilla reached for Tia. “Please, God. Why are you doing this to her?”
“We’ll find it, Priscilla,” Sara said, putting a hand on Tia’s head.
On Easter Sunday Tia reached a low point. Priscilla wanted to attend church. Since Tia’s hospitalization she had not been once. She arranged with Steve to sit with Tia while she took the boys and her mother, who was staying with them, to Aldersgate. After the service, half the congregation crowded around to ask after Tia. Following the service, Priscilla, her mother, and the boys walked up the hill with a basket of toys.
“How is she?” she asked Steve.
“Dr. Arnhold says she’s a little better. He got all excited because she cried some real tears. It means she’s not too dehydrated,” he explained to Priscilla’s mother. “She’s still malnourished, though.”
Priscilla nodded. Tia lay very still in her bed, just following them with her eyes. She didn’t lift a hand to the toys the boys put on her bed.
“Here, Tia. Why don’t you try to sit up? See the toys we brought? Here’s an Easter basket.” She tried to help Tia to sit but Tia slumped back as soon as Priscilla let go.
Priscilla and Steve exchanged glances. Marietta bent over the crib and took Tia’s limp hands. Tia smiled faintly at her grandmother.
The next day, Priscilla talked about Tia’s deterioration with Sara. Sara had been away on a week’s vacation and Dr. Arnhold had been covering. When she saw Sara coming onto the ward, Priscilla rushed up to her, crying.
“Oh, Sara—it’s been so bad. The IV’s infiltrated again. She’s so lethargic, and this morning she’s cramping and screaming.”
“Take it easy, Priscilla. I’m going to talk to Dr. Applebaum again. Give me a chance to examine her and check her chart.”
At noon, Sara returned to the ward and found Priscilla.
“We’re going to transfer Tia back to San Francisco,” she said. “She will need to be there at least three weeks. Dr. Applebaum wants to try central venous hyperalimentation. That’s the same as peripheral alimentation except that a catheter is inserted surgically into a central vein that leads directly to the heart.”
“Oh, Sara—“
“I know it sounds scary, but though it’s a little delicate, it’s really quite a minor procedure. And then we won’t have to worry any more about cut-downs getting infected or IVs infiltrating. We’ll always have a vein directly accessible and open.”
“Well, why didn’t we do it before?”
“Because it carries some risks. For one thing it has to be carefully monitored all the time. There is always the danger of infection, and because you’re dealing with a vein leading directly to the heart, that’s more of a problem when infection occurs. And that’s why it has to be done in the city. We simply don’t have the staff here to watch Tia as closely as she has to be watched. The point is that her nutrition is so marginal now, it’s become essential to get those calories in and circulating. And her peripheral veins are just too depleted. So we don’t have a choice anymore. I know how much you hate it over there, but we’re just going to have to do it.”
Priscilla wrote:
Monday. Sara back. IV infiltrated so started Pedialyte in NG tube slowly. Violent cramping, screaming, so sedatives given—slept—then at noon Sara told me about transfer to city—3 weeks at least—central venous line, hyperalimentation, etc. Plans to be firmed up this P.M. as to exact time of transfer. At 4:00 P.M. diarrhea started again so Sara started IV and stopped NG feeding. Lost 10% of body weight—down to 5.84 kg and looked horrible—very upset—Sara came over later in P.M. (11:00) to check her out.
Tia was transferred and scheduled for surgical placement of the central venous line the next day. After the surgery, Tia was returned, semiconscious, to her room. She had dressings on her neck and also on her chest covering the site where the plastic line emerged from her heart. Priscilla picked Tia up and lay back in the recliner holding the baby, dressed only in a diaper, on her lap.
When he next saw her, Dr. Applebaum asked Priscilla what had happened. He had never heard of an eleven-month-old baby pulling out a central venous catheter. There were those who, in light of later events, never believed what she reported.
“I don’t know,” she said. “I was asleep and so was Tia, and the next thing I knew, she was dangling the tube from her hand, and I could see that the bandage they had taped over the chest wound was pulled loose. I didn’t realize at first that she had pulled the whole thing out. The nurses came in and applied pressure. Then the next thing I knew they were saying they were going to have to go through the whole surgery again! I was really kind of embarrassed that it happened while I was holding her!”
On that day, Priscilla left her journal blank.
Two days later, the catheter was replaced. This time they stitched the external portion of the tube to Tia’s chest so it couldn’t pull loose. Priscilla and the nurses kept Tia fully dressed from then on, with the end of the central venous line threading out through the bottom of her playsuit.
A week after the reinsertion of the central catheter, she began stooling again. Subsequently Dr. Applebaum was to reconsider the opinion he expressed to Priscilla at the time.
“I think this resumption of stooling is confirmation that what Tia has is secretory diarrhea,” he said. “Because it’s not affected by oral intake. Tia hasn’t had any oral intake—nothing has gone through her digestive tract except in tiny drops. I don’t think this can be a result of an inflammation of the lining of the small intestine. So at least we’re starting to be able to rule things out.”
“What exactly is secretory diarrhea?” Priscilla asked.
“It’s an illness caused by the secretion of a hormone that increases intestinal motility. We’ll be able to test for some of these hormones—some of them are just being discovered and written about now. But first I want to get Tia’s nutritional status back to where it belongs.”
They were still trying to do that, Priscilla knew. She crossed over to Tia’s crib to take off her party dress.
“Your next birthday, you can leave your dress on all day,” she said to Tia, working at the buttons of the dress. “And have as much cake and ice cream as you like.”
Tia smiled.
7
“Look, mister, you can’t camp here. This is all part of Stanford University, and there’s no camping allowed anywhere on campus.”
Steve pounded a big hand on the steering wheel of the van.
“Damn it, man, I’ve got a sick little girl in your hospital and my two little sons in the van here and we’ve come from San Rafael to be with my daughter while she has some surgery. I’ve been circling around this place for hours! Where the hell can we go?”
The guard shrugged. “Sorry, mister. No camping allowed.”
“Well, what about parking? You allow parking here? Or is that off limits, too?”
“You can park. But there’re limits. Most of the spaces are for two hours. And you gotta pay. This is a busy hospital, buddy. You allow free parking around here and all the students and visitors and everybody else takes advantage. Then you never have parking for the families.”
“Yeah, yeah. Let me through, all right?” Steve pulled the camper into the lot and parked in one of the spaces. He’d deal with the camping problem later, he thought. Right now he had two bored kids to deal with and Pris up there on the pediatric ward with Tia. First things first.
God, he hoped this trip would prove worthwhile, Steve thought as he made his
way up the long drive to Stanford Hospital, the boys leaping and running in front of him, just dodging the high arcs of water put out by the sprinklers on the huge lawns.
They had planned to spend four days at Stanford. It was decided that Steve should take the boys to Marine World tomorrow to get them out of everybody’s hair while Priscilla stayed with Tia. It gave the whole trip a purpose for the boys, other than just for Tia’s surgery. The boys needed some special attention. They hadn’t been getting much from Mama, Steve thought. Not since Tia had been hospitalized in March. God, it was hard for him to believe she had been hospitalized four straight months now—half of her life in America. And Pris had been pretty much of a stranger. Their sex life was going down the tubes. Hell, they were both exhausted all the time, even when they did get together.
Steve collared the boys and located the escalator leading up to the pediatric ward. He found Priscilla and she showed the boys the cheery, toy-filled playroom in the center of the ward. The ward was well-designed, with a little outdoor patio, a section with soda machines, and a waiting room with a TV. Erik and Jason would have enough to keep them busy for a while.
“How’s Tia doing?” Steve asked.
“Oh, it’s a big mess. You know how Sara said we could bring her here ourselves instead of by ambulance only if we agreed not to stop anywhere, so her treatment wouldn’t be interrupted or anything?”
“Yeah. So?”
“Well, no one even came in to see her—not for two hours. And they haven’t given her anything to eat. And now a doctor finally arrived and looked at her chart and said her case was too complicated and that she shouldn’t be in the ward but in a private room. So after all that they’re going to move her, and she still hasn’t had anything to eat.”
“Damn, Pris—you know how these hospitals are. After all your experience, you know how these places operate.”
“I know, but this is supposed to be such a great hospital. I expected better,” said Priscilla.
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