When at ten o’clock the meeting was finally adjourned, Evelyn flew after the departing white coat of Sara Shimoda and cornered her in her office.
“Sara, I’ve got it! I know what it is,” she said.
“What?”
“What’s being given to Mindy. I know what it is. It’s got to be a sodium cathartic—it’s got to be Epsom salts. Now what’s in Epsom salts?”
Neither of them knew.
“Let’s see your Goodman and Gilman. Do you have it here?” Evelyn persisted.
Sara did. She lifted the heavy pharmacology book and handed it to Evelyn, who hunched over it, leafing through the pages, her brown eyes intent.
“Sodium magnesium sulfates,” she read. “Now how can we test for the presence of those? Can we test for sulfates? See if we can get the magnesium—I know we can get the magnesium!”
But because they both had patients to see and were late already, they did not have time to pursue Evelyn’s idea. And, as Evelyn found out later, it would soon cease to matter.
3
Priscilla Phillips sat comfortably in the low, vinyl-upholstered, orange chair the hospital provided, her legs and feet trim in hose and low-heeled shoes, and looked down at her daughter. Mindy lay back in Priscilla’s lap, sucking eagerly on her bottle; she had definitely improved. Sara had indicated that she might possibly discharge Mindy today and Priscilla had whooped in excitement at the news.
“It will be a double celebration,” she’d said to Sara. “Today’s my thirty-second birthday.”
“Let’s keep our fingers crossed then,” Sara said.
Priscilla studied Mindy as she held her. Priscilla tried to avoid comparing her children, but sometimes this was inevitable. She saw none of Tia’s beauty or charm in Mindy, who had a broad nose, slightly flattened against her high cheekbones, much yellower skin, and a wider face. Now even the bangs which Priscilla had proudly cultivated—thicker than Tia’s had ever grown—had been shaved off with a razor so an IV could be placed in a scalp vein. This mutilation had been accomplished, Priscilla had complained to Steve, by a doctor without children of her own. Apparently it had never occurred to Dr. Janet Specht how a mother would view the results. Priscilla thought the uneven shave made Mindy ugly and destroyed her best feature, and for no reason. Dr. Specht could have used a different vein for the IV.
And Priscilla found Mindy less gratifying a child than her sister had been. Mindy did not accept things the way Tia had. She was a fighter—noisy and hard to please when she was irritated, which was often. She screamed at night, sometimes for hours. Still, Mindy had been with them only three and a half months—she was not legally adopted yet—and her previous experiences in a Korean orphanage and a Korean foster home hardly amounted to a stable home environment. Priscilla was a trained social worker, and she knew how hard it was for children to adjust to new family situations.
The doctors didn’t really know what was wrong. They knew she had gastroenteritis, but they couldn’t find a cause. Perhaps it was because Mindy was Korean, Priscilla had often said. It was a point she and Sara had discussed. After all, Priscilla had been told by the adoption agency to expect diarrhea at first. That was a standard warning issued to all adoptive parents of Asian children. Or maybe it was just a bad attack of flu, she had suggested. They had all come down with it in the days before Mindy’s hospitalization. Priscilla and Steve, Erik and Jason. The whole family.
Priscilla moved awkwardly on the uncomfortable chair. She had learned a great deal with Tia’s illness. She knew all about IVs and NGs, about electrolyte values and blood tests, about reducing substances and special formulas and dehydration.
She had always insisted on total involvement, repeatedly informing the medical staff that nothing bothered her more than to be left out of things. Once an ugly scene over Tia’s care had developed at the Kaiser hospital in San Francisco. That had been in July, when the new year’s group of interns joined the staff, fresh from medical school. Some of the new doctors reacted defensively to her questions at first, but she had explained that she only wanted to help, and certainly she was proficient. In fact, they ultimately allowed her to take Tia home with an open tube in place that led directly to her heart. Priscilla believed herself to be the only parent they had ever trusted to handle this procedure without supervision.
And she knew she had earned the respect of most of the nurses on the ward. Some had become real friends. In the beginning, Debby Roof, one of the pediatric nurses, couldn’t stand Priscilla—thought she was high-handed and bossy—but Priscilla had won her over with her constant devotion to Tia.
Priscilla bent over Mindy’s wriggling, slight figure and without a trace of false gentleness competently adjusted her bottle. When Mindy was finished, Priscilla swung her over a shoulder and began a brisk patting. So far Mindy had been on oral feedings and a naso-gastric tube had not been necessary, but the bottle alone could not provide enough fluid. Priscilla knew that Mindy needed the IV for rehydration, and that when her peripheral veins—which they preferred to use for the IV—had been depleted, Sara and the other doctors had been forced to try two other sites for cut-downs, to get down to the larger, deeper veins in Mindy’s ankles. There they had found one vein completely missing and the other unusable. That is why the surgeons—and it had taken two of them—had worked so hard to place the line in Mindy’s inner elbow. Shrieking in panic, she had been held down, her screams ringing through the ward. After this there was only one other vein available in the other arm. In an emergency they could try the jugular. At that point, Priscilla understood that they might run out of time.
4
An hour and a half later, Steve Phillips sat on the floor by Mindy’s bedside with his sons, Erik and Jason. Priscilla thought it was important, and so did he, for the whole family to spend as much time together as possible, even if it had to be at the hospital. Mindy, after all, had not been with them very long, and she needed to feel that she belonged.
His family, it seemed to him, was just about perfect—but for the death of Tia. His two sons were blond and sturdy: Erik had just turned eight and was a smart kid—he took after his mother in that, Steve acknowledged—and Jason was five, sweet and serious. They were a happy and loving family, a solid family, despite the arguments they sometimes had.
Mindy was out of her crib and playing with the boys on the floor. She was full of piss and vinegar today, Steve thought. Things were definitely on the upswing this morning. Steve had given her the bottle of Cho-free himself, and she had practically inhaled it. The nurse had been in and noticed it, smiling. It appeared they might even be allowed to take Mindy home. Damn, he hoped so.
Neither he nor Pris did much to hide their emotions. That was why Debby Roof had suggested that they meet with Dr. Shimoda. To let it out, talk about the pressures, hang it all out there to dry—that was how he looked at it. They had met at the hospital last Sunday. Afterward he had stayed for almost twenty minutes, confiding to Debby that Mindy’s illness was putting a strain on their marriage. It was worse than the pressures on Erik and Jason, though that was the topic they had mainly discussed in the meeting with Sara. Talking had been a relief, he thought, eyeing Mindy as she crawled toward him, trailing her tubing. He smiled down at her and helped her to stand against him.
Priscilla always wanted to talk everything through. Partly it was her social worker’s training, partly just her personality, but when things turned rough for him, Steve retreated to the garage, puttered around morosely, and immersed himself in TV. Sometimes when he talked he felt he might explode, and he was too big a man for that.
He couldn’t have held a position in juvenile hall as a group counselor very long without that basic insight. If he exploded around those kids, he could do irreparable damage. It was the same at San Quentin, where he had worked for a year as a correctional officer in ‘69 and ‘70. Day after day he had walked into that yard unarmed. When he thought about it, all he had between himself and oblivion at the hands of some space-ca
se with a hand-sharpened spoon was a brass whistle. So he didn’t explode. Not physically.
He thought it was all right to yell. He was big enough at 6 feet and 215 pounds, with a big bull neck disappearing into wide shoulders, to intimidate a lot of people. And he knew that if you have a nice South Carolina drawl and talk in pictures so sharp and real that the guy you’re facing really sees what’s in store for him should he put one foot outside the line you’ve set up for him, that sucker listens. That’s what he’d learned. Maybe it was intimidation, but if they didn’t cross Steve Phillips, he damn well wasn’t going to cross them. And that was the bottom line, he felt. Or at least it was as good a way as any to put himself across. Because underneath was something a lot softer than he cared to admit.
5
At six P.M. that same Wednesday evening, Sara finished the last of her progress notes on Mindy’s chart. Her head in her hand, she sat slumped at the nurses’ station on the fifth floor of the hospital, Five West, the pediatric ward.
Sara could see that Mindy had suffered through a bad afternoon just by reading her chart. Suddenly at four o’clock, after more than twelve hours of no stool, the diarrhea had started again. Within two hours the baby had put out 274 cubic centimeters of liquid stool in a total of six different stooling episodes, and she was fussy and irritable. Her output far exceeded her intake and this was a potentially dangerous situation, especially in view of her poor veins. It might become impossible to rehydrate her fast enough.
For the second time, Sara restlessly checked the four pages of notes she had written in the chart. First she had summarized the patient’s course since her admission on February sixteenth, listing the intake and output for each day. Then she had made another note:
This patient is not a typical case of gastroenteritis and is falling into the category of chronic diarrhea. Her course seems to follow one compatible with secretory diarrhea, i.e., not necessarily affected by p.o. intake. I have checked her several times for evidence of osmotic diarrhea secondary to carbohydrate malabsorption by checking stool Ph and reducing substances. This patient has had greater than 6-7 Ph and negative reducing substances and I will continue checking the stool Ph—and reducing substances—daily. She is not receiving enough calories yet to allow for weight gain. Patient’s weight = 6.5 kg X 75-100 cal/kg = 500-650 cal per day. Patient just had another 270 gm stool output after a 12-hour period of no dietary change today and patient has been on Cho-free + 5% polycose x 36 hrs.
It was beginning to sink in. No matter what they put into this child, the state of her gastrointestinal tract did not, as it should, reflect her diet. This was not a case of gastroenteritis. Whether it was a case of secretory diarrhea, or something different—and more ominous—was now the question, Sara realized.
She still planned more tests for Mindy, although the workup was essentially complete. The normal blood tests indicated no immunodeficiencies that might cause diarrhea, but Sara needed to check with an endocrinologist the possibility that Mindy might be suffering from an unusual case of Bartter’s Syndrome. There were some other possibilities, too—rare, but not impossible—to rule out. They were all things she had once investigated with Tia. She noted down her plan to increase Mindy’s diet to allow for weight gain, her decision to try some rice cereal, and her plan to keep the IV running for as long as the cut-down appeared clean. She had decided to treat Mindy for the parasite giardia, despite the negative stool sample, because sometimes that parasite could be elusive. She had hesitated over it but finally concluded that it wouldn’t hurt to treat her.
Sara lifted herself to her feet and stretched, one hand bracing her back, her dark eyes closed against the fluorescent glare. She had one more note to add, and she made it, finally. Once written on the copybook-style lined paper they issued for the progress notes, it did not look so dramatic:
Consider that some type of toxin may be responsible. Urine sent for heavy metal analysis.
The heavy metal test for mercury, lead, and arsenic had been run once before, on February sixteenth, and it had been negative. Janet Specht had ordered that test. Perhaps the result would be different this time.
There, it was done. And tomorrow was her day off. By Monday she would have some more answers, one way or another. And on Monday she would talk to the San Francisco coroner. It could all wait until then.
6
By the early hours of Friday, February twenty-fourth, Mindy had deteriorated sharply. She lay pale and flaccid in Priscilla’s lap, her eyes black and dull. Since ten-thirty Thursday night, Mindy’s stooling had been explosive, and she had been vomiting.
Priscilla had arrived the previous morning, Sara’s day off, to learn of the new order for rice cereal. Mindy was only to have three teaspoons, to be increased gradually if she tolerated it well, but this represented a major advance, and Priscilla had danced around the ward, beaming. It was the very first time in her hospitalization that Mindy had been allowed solid food.
“This is my red-letter day!” Priscilla exulted to the nurse. “Debby and Maria are taking me out to lunch for my birthday, and now Mindy’s on solid food. I can’t believe it!”
At noon, Priscilla fed Mindy her noon meal. She was hungry and had a good appetite. But when Priscilla returned to room 503 following the birthday lunch in nearby San Anselmo with the two nurses, Debby and Maria Sterling, she was horrified. Dr. Arnhold, the pediatrician on the ward that day, had changed Mindy’s entire intake protocol. Instead of the rice cereal, Mindy now had a naso-gastric tube for feeding. And Priscilla knew that meant she had been taken to the Treatment Room across the hall and held down while the tube had been threaded through her nose into her stomach. They had not waited for Priscilla. In addition, Priscilla was told, they had started up two new medications which—along with her Cho-free formula—would be given through the NG tube. These were to be quinacrine — a treatment for giardia—and cholestyramine, which might help to control Mindy’s diarrhea. As both these treatments had been tried with Tia, they were not unfamiliar to Priscilla.
But they had not waited for her, and they had not told her in advance about the changes. To Priscilla this was monstrous, unforgivable, and she was in tears. Dr. Arnhold explained that Mindy’s resumed stooling had precipitated the decision to insert the NG tube. Sara and Dr. Applebaum agreed with the change in treatment.
Priscilla knew that if Mike Applebaum was involved, the problem had escalated. Dr. Applebaum was the expert in pediatric gastroenterology from Kaiser-San Francisco. He had been the consultant in Tia’s care, treating her himself many times during her hospitalizations in San Francisco. And if he was being consulted, it meant that far from improving, Mindy’s condition was worsening, that once again they needed a specialist to help them.
Unhesitatingly, Priscilla called Sara at home.
“Sara, why didn’t you tell me before they put the NG down? You know how I feel about their doing things and not letting me know. And especially when she’s never had an NG, when she’d be so scared…” She was still crying, but through her tears her voice was high and strong.
“Because I thought it would upset you,” Sara said. “I thought it would remind you of Tia.”
“It did remind me of Tia. My God, what’s going on?” Sara hesitated.
“I’ll come in and talk to you about it, Priscilla. Just wait there for me.” And so, on her afternoon off, Sara returned to the hospital.
“Mindy’s not keeping enough down to grow on,” Sara explained quietly. “She weighs the same today as she did when she came from Korea four months ago. She’s not thriving. If we can’t get her straightened out pretty quickly, she’s going to need—well… she’s going to need hyperalimentation… just like Tia.”
“Oh, Sara, no! Don’t tell me that!”
“Well, we may not need to. But her veins are so small, and—it’s just that I want you to be prepared—”
“Will she have to go to San Francisco? I don’t believe this. Oh, Sara, please—”
“I do
n’t know. We might be able to handle it here.”
“What about the central venous catheter? Will she need that? I know her veins are so bad. Oh, Sara!”
“Please, Priscilla. I don’t know. I just don’t know yet. There’s no use getting so upset now. The CMV might be making her more susceptible. It’s possible that what Mindy has is just a viral thing, but because she’s behind in her development…” she stopped and hesitated. “Well, it could all be tied in with the CMV; it could all be relevant.”
“I still think it’s the flu. It’s got to be that,” Priscilla said. Sara did not answer.
Mindy continued stooling, fussing, and crying throughout the afternoon. The Cho-free formula was being dripped, drop by measured drop, into her NG tube. The IV continued in the cut-down, miraculously still holding in her right arm. Priscilla stayed with her, held her. Occasionally she took a break, wandering out to the little kitchen down the hall to grab a Diet Pepsi from the stock she was able to keep in the refrigerator there or stopping at the nurses’ station for a chat. Then she returned and kept watch over her daughter.
At seven that evening, the nurse came in to give Mindy her medication. Priscilla watched the woman carefully because already that afternoon she had had to stop the same nurse from administering medication before it was due. Both the NG tube and the IV line were hooked up to separate pumps that precisely regulated the flow of formula and IV solution. Mindy was a mass of lines and tubing. The quinacrine that Sara had ordered to treat giardia was to be injected directly into the NG tube through one of the many joints in the tubing. But the tubing for both the IV and the NG were identical. And the nurse injected the medication in the wrong one.
For a moment Priscilla stood frozen as she watched the yellowish quinacrine entering the vein at the site of Mindy’s cut-down. Then she screamed.
“It’s the wrong one! It’s the wrong one!” And as the nurse hurriedly cut off the flow of medication, Priscilla ran hysterically into the hall of the ward after Dr. Arnhold, shrieking his name.
A Mother's Trial Page 2