A Mother's Trial (3 page)

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 don’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.

Priscilla watched as an Unusual Incident form was filled out. Approximately two cubic centimeters of quinacrine had entered Mindy’s vein instead of her gastrointestinal tract. This kind of thing happened in hospitals. Priscilla had seen it several times before, and that was one reason why she so carefully checked all of the procedures. She knew medical personnel were fallible. But that didn’t help her deal with this mistake despite Dr. Arnhold’s assurance that it was unlikely to cause a problem.

 And there was a problem. Mindy had become confused and hysterical. She screamed and struggled and twisted until Priscilla thought her arms would burst with the effort of holding her. Priscilla talked to her and bounced her to no effect. Mindy suddenly started tearing at the dressing over the cut-down in her elbow in an attempt to rip the needle out of her vein. And then she began to pull at the NG tube, fighting it, trying to tear it out.

Finally Priscilla called out for help. Dr. Arnhold was summoned. Priscilla knew him well. He had been the pediatrician for Erik and Jason before he had left the country on a long sabbatical and she had changed to Sara.

“Priscilla, if she doesn’t stop doing that, we’re going to have to tie her down. You know that cut-down is too precious to lose, and her stomach is in no shape to deal with bottle feedings, so we need the NG drip, too. We can’t have her pulling that out.”

Priscilla reacted instantly. “My God, Dr. Arnhold! First you half kill her with the quinacrine in the IV, and now, when she gets upset about it, you want to tie her down?” The tears were tracking unnoticed down her face.

“Well—” began Arnhold.

“I’ll stay with her!” Priscilla interrupted, her voice echoing throughout the ward. “Let me stay with her! I’ll see that she doesn’t pull out the lines!”

“Well, if you think you can, all right,” Arnhold relented. So she had stayed.

Now it was midnight and Mindy was throwing up and stooling and deteriorating noticeably. Finally the nurse phoned the doctor on call. Mindy was ordered NPO.
Nil per os.
The medical shorthand for nothing by mouth. Even all the medications, for the time being, would be held. The nurse clamped off the NG tube, leaving it in place. NPO was a standard medical procedure for a patient suffering from diarrhea. Tia had once gone for weeks NPO. In Mindy’s case, sometimes it seemed to work to make her NPO, sometimes it didn’t.

This time it was successful. The rest of the night passed without incident. At 6:45 A.M. that Friday morning, just as the day nurses came on shift, Priscilla watched the nurse draw Mindy’s blood to check her electrolytes. This, too, had become regular procedure. Still, Mindy screamed as the needle entered the vein. The night nurse went off duty, and Priscilla fell into Debby Roof’s arms as she came on the ward to start her shift. Priscilla had not talked to Debby since the birthday lunch the day before. She told Debby all about the wrong medication and the change in Mindy’s treatment. How she had fought to keep Arnhold from tying Mindy down. About Mindy’s deterioration.

“This is just like it was with Tia,” she sobbed. “It’s happening again, and I can’t control it, or stop it. And Sara’s worried now. I can tell!”

“But Mindy’s better, Priscilla,” Debby protested. “See, she hasn’t had any stool since she was made NPO. It’ll be all right.”

At eight-thirty, Mindy’s NG tube was unclamped and the formula drip resumed. She was given another dose of cholestyramine through the tube. It might help prevent the diarrhea.

Priscilla, as she customarily did after spending a night at the hospital in her clothes, went home for breakfast and to change.

“I’ll be back later,” she promised Debby.

7

At five-thirty that Friday afternoon, Dr. Sara Shimoda planned to meet with Drs. Arnhold, Callas, and Estol Carte. She was on the point of leaving for the weekend with her husband and daughter to visit her parents near Fresno. Arnhold would be on call that night, with Carte and Callas to share hospital duties over the weekend. Sara needed to talk to them.

Mindy’s deterioration remained uppermost in her mind. She was also concerned about the results of the test for sodium that had been run on Mindy’s stool sample collected on Wednesday, the same day Sara had presented Mindy’s case at the staff meeting.

Like most doctors, Sara almost never ordered stool sodium tests. Serum sodium tests were valuable, and often essential, diagnostic tools. But stool sodiums were rarely significant because a test of the amount of sodium in a patient’s stool simply reveals what the person has eaten. If a patient has consumed a high-sodium meal of ham and potato chips, the excess sodium in his gastrointestinal tract will be thrown off in the urine and the stool. So the level of sodium in a person’s excretions will vary quite a bit depending on his day’s menu. In a normal, healthy child, a stool sodium might range between 20 and 90 milliequivalents per liter, with 20 or 30 as a good average. When a child is suffering from diarrhea, the level of sodium concentrated in the stool can go higher. Every doctor knew this, and knew a stool test would reveal this. So there was usually no point in testing stool sodium. Most doctors, no matter how long they had practiced, never had occasion to order the test.