The Spirit Catches You and You Fall Down (18 page)

On November 25, 1986, the day before Thanksgiving, the Lees were eating dinner. Lia, who had had a mild runny nose for several days, sat in her usual chair at the round white Formica table in the kitchen, surrounded by her parents, five of her sisters, and her brother. She was normally an avid eater, but tonight she had little appetite, and fed herself only a little rice and water. After she finished eating, her face took on the strange, frightened expression that always preceded an epileptic seizure. She ran to her parents, hugged them, and fell down, her arms and legs first stiffening and then jerking furiously. Nao Kao picked her up and laid her on the blue quilted pad they always kept ready for her on the living room floor.

“When the spirit caught Lia and she fell down,” said Nao Kao, “she was usually sick for ten minutes or so. After that, she would be normal again, and if you gave her rice, she ate it. But this time she was really sick for a long time, so we had to call our nephew because he spoke English and he knew how to call an ambulance.” On every other occasion when Lia had seized, Nao Kao and Foua had carried Lia to the hospital. I asked Nao Kao why he had decided to summon an ambulance. “If you take her in an ambulance, they would pay more attention to her at the hospital,” he said. “If you don’t call the ambulance, those
tsov tom
people wouldn’t look at her.” May Ying hesitated before translating
tsov tom
, which means “tiger bite.” Tigers are a symbol of wickedness and duplicity—in Hmong folktales, they steal men’s wives and eat their own children—and
tsov tom
is a very serious curse.

It is true that, whether one is Hmong or American, arriving at an emergency room via ambulance generally does stave off the customary two-hour wait. But any patient as catastrophically ill as Lia was that night would have been instantly triaged to the front of the line, no matter how she had gotten there. In fact, if her parents had run the three blocks to MCMC with Lia in their arms, they would have saved nearly twenty minutes that, in retrospect, may have been critical. As it was, it took about five minutes for their nephew to come to their house and dial 911; one minute for the ambulance to respond to the dispatcher’s call; two minutes for the ambulance to reach the Lee residence; fourteen minutes (an unusually, and in this case perhaps disastrously, long time) for the ambulance to leave the scene; and one minute to drive to the hospital.

Years later, when Neil Ernst looked over the ambulance report, he sighed and said, “That EMT was in way over his head.
Way
over.” According to the report, when the ambulance arrived at 37 East 12th Street at 6:52 p.m., this is what the emergency medical technician found:

Lia was on the verge of death. The emergency medical technician fitted a plastic airway over her tongue to prevent it from blocking her throat. After suctioning her mucus and saliva, he placed a mask over her nose and mouth and forced oxygen down her trachea by squeezing a hand-held resuscitation bag. He then attempted to insert an intravenous line in one of her antecubital veins, in front of the elbow, in order to administer an anticonvulsant drug. He failed, realized crucial minutes were being lost, and ordered the driver to head at top speed for MCMC with the ambulance on Code III (the most emergent, with lights flashing and sirens blaring). En route, the EMT tried desperately to insert the IV again, and failed two more times. As he later noted, in shaky handwriting, “Pt continued to seize.”

The ambulance arrived at MCMC at 7:07. Lia’s gurney was rushed into Room B. Of the emergency room’s six cubicles, this was the one reserved for the most critical cases, since it contained a crash cart, a defibrillator, and intubation equipment. Lia had been there several times before. Room B is a twenty-by-twenty institutional-beige cell smelling faintly of disinfectant, sheathed from floor to ceiling in synthetic materials from which blood, urine, and vomit can be easily cleaned: a clean, bland backdrop against which hundreds of cataclysmic dramas have been played out and then scrubbed away. Lia was thrashing violently. Her lips and nail beds were blue. There was no time to undress her. A nurse tore off the blanket in which she was wrapped and, using bandage scissors, cut off a black T-shirt, an undershirt, and a pair of underpants. An emergency physician, two family practice residents, and the nurse surrounded Lia, trying to start an intravenous line. They took more than twenty minutes to insert a butterfly needle, attached to a small-bore tube, in the top of her left foot—a stopgap measure, since any movement on Lia’s part was likely to cause the needle, which was left in the vein, to poke through the vessel wall and spill the IV solution into her tissues instead of her bloodstream. A large dose of Valium, a sedative that usually halts seizures by depressing the central nervous system, was pushed into the line. It had absolutely no effect. “We gave her Valium, more Valium, and more Valium,” recalled Steve Segerstrom, one of the residents. “We did everything, and Lia’s seizures only got worse. I went very rapidly from calm to panic.” Steve tried repeatedly to start a more reliable IV, and failed. Lia continued to seize in twenty-second bursts. Vomited rice began to pour from her nose and mouth. The aspirated vomit, in combination with the impaired ability of her diaphragm to move air into her lungs, was compromising her ability to breathe. A respiratory therapist was summoned. An arterial blood-gas test showed that over the last hour or so, Lia’s blood had probably contained levels of oxygen so low as to be nearly fatal: she was asphyxiating. Despite her seizures and her clenched jaw, one of the residents somehow managed to pass a breathing tube into her trachea, and she was placed on a hand ventilator.

Neil’s pager went off at 7:35. He and Peggy were eating dinner with their two sons. They were planning on spending the evening at home, packing for their Thanksgiving vacation at the family cabin in the Sierra foothills, for which they would leave the next morning. Neil called the emergency room. He was told that Lia was in prolonged status epilepticus, that no one could get in a good IV, and that the Valium wasn’t working. “As soon as I heard that,” he recalled, “I knew that this was it. This was the big one.”

Neil had been afraid for months that when this moment came, he would be the one on call, and he was. He told the resident to give Lia more Valium and, if that didn’t work, to switch to Ativan, another sedative, which, when administered in large doses, is less likely than Valium to make a patient stop breathing. He jumped in his car, drove to MCMC as fast as he could without breaking the speed limit, and at 7:45 walked briskly—no matter how frantic he felt, he made a point of never running—through the emergency room door.

“It was an incredible scene,” Neil said. “It was like something out of
The Exorcist
. Lia was literally jumping off the table. She had restraints on, but her motor activity was so unbelievable that she was just jumping, just hopping off the table, just on and on and on and on. It was different from any seizure I had ever seen before. I remember seeing her parents standing out in the hall, just outside the emergency room. The door was open and people were running in and out. They must have seen everything. I caught their eye a couple of times but I was too busy to talk to them right then. We had to get in a more substantial IV and there were the usual problems—her fat, her sclerosed veins from previous IVs—only much worse this time because of her absolutely tremendous muscular activity. Steve Segerstrom said, Do you think it’s worth trying a saphenous cutdown?” (To perform a “cutdown,” a physician makes a skin incision, nicks a blood vessel—in this case a large vein above Lia’s right ankle—with a scalpel, dilates the hole with forceps, introduces an intravenous catheter, and sutures it into place.) “And I said, Gee, Steve, at this point, anything is worth it, go ahead and try. The atmosphere in the room was just
charged
. People were literally lying on Lia’s legs while Steve started the cutdown. And he got it! And then we gave Lia just a ton of medicine, a lot, and a lot, and a lot. And finally, she stopped seizing. She finally stopped. It took a long time, but she finally stopped.”

I had never seen Neil so upset as he was when he told me this. Steve Segerstrom sounded upset too when he recalled the incident, but Steve is an excitable man and a fast talker, so the contrast between his normal tone and his tone as he described the scene in Emergency Room B was far less noticeable than it was with Neil, who is usually so calm. When Neil finished talking, I could hear him breathing—not heavily, but audibly, as if he had been interrupted partway through his morning’s eight-mile run.

This was Lia’s sixteenth admission to MCMC. Everyone at the hospital—the emergency room nurses, the residents, the respiratory therapist, Neil—all assumed that Lia had the same thing wrong with her that she had had on her previous fifteen admissions, only worse. All the standard tests were run: blood counts, blood chemistries, blood pressures, and a chest X ray to confirm the placement of the breathing tube. Of course, Lia’s blood was tested to find out if her parents had been giving her the prescribed amount of Depakene. Like every test since Lia’s return home from foster care, it showed that they had. No one thought of taking her temperature, which was 101°, until after Neil had returned home. Two other unusual signs—diarrhea and a very low platelet count—were simply noted without comment on Lia’s chart, eclipsed into invisibility by the monumental scale of her seizures. No antibiotics were administered because no infection was suspected.

A twenty-minute bout of status epilepticus is considered life-threatening. Lia had seized continuously for nearly two hours. When she stopped, she was unconscious, though breathing. Because MCMC does not have a children’s Intensive Care Unit, it was obvious that Lia, like all of Merced’s critical pediatric cases, had to be transferred to Valley Children’s Hospital in Fresno. During the thick of the crisis, no one had said a word of explanation to Foua and Nao Kao, who had been forbidden to enter Emergency Room B. Steve Segerstrom’s Procedure Note for the saphenous cutdown tersely states, “Consent is implied due to severity of patient’s illness.” At some point, a nurse handed Foua the ruined clothes that had been cut off her daughter. After Lia’s vital signs were stable, Neil walked slowly out into the hall. He had sweat stains running from his armpits to his waist. Using the English-speaking nephew as an interpreter, he explained the situation to Foua. “I told her that this had been the big one,” he recalled later. “This was the worst seizure Lia had ever had, and it was very, very difficult to stop it, but we had stopped it. She was still very, very sick. I told the mother about the need to go to Fresno, because Lia would need stuff that Peggy and I couldn’t do. I also told her that we were leaving town but we would be back next week. And she understood that.” On Lia’s Progress Record, Neil scrawled, “Transport arranged for VCH ICU. Parents spoken to and understand critical condition.”

In fact, the parents understood an entirely different version of reality from the one Neil intended to convey. When I asked them why they thought Lia had been sent to Fresno, Nao Kao said, “Her doctor was going on vacation, so there wasn’t any doctor here, so they sent her away.” Foua said, “Lia’s doctor was good at taking care of Lia. Sometimes when she was very, very sick, we would take her to him and he would make her better in a couple of days and she would be bouncing around and walking around. But that time he went to play, so they had to send Lia to someone else.” In other words, the Lees believed their daughter was transferred not because of her critical condition but because of Neil’s vacation plans, and that if she had stayed at MCMC, he would have restored her to health, just as he had on every other occasion.

At 9:30, after he had arranged for an ambulance to take Lia to Fresno, instructed his staff on how to prepare her for transfer, and discussed her case by telephone with the Pediatric Intensive Care Unit at Valley Children’s, Neil drove home. He told Peggy, “That was it. She did it this time.” The two of them talked until almost midnight, retracing every moment of Lia’s crisis and each of Neil’s decisions. “I was so fired up,” he recalled, “I just couldn’t come down. When I’m like that I have trouble sleeping, and I start food-cramming—I just start stuffing stuff in my mouth. And I have to tell Peggy all about what happened.” Peggy was accustomed to talking Neil down from hospital emergencies, but she had never seen him this wound up.

“That night my feelings were mixed,” said Neil. “It had been just like my nightmares—that Lia would have the most terrible seizure of her life and it was going to be my fault because I couldn’t keep her from dying—but she
hadn’t
died, and with some real capable people helping, I stopped it and I took care of it and I was able to meet the challenge. So I felt a certain amount of satisfaction. But I also felt terrifically sad because I didn’t know what Lia was going to be like when she came out of this. I was pretty sure she wasn’t going to be the same.”