The Spirit Catches You and You Fall Down (6 page)

A vein hidden under fat is hard to palpate. Like a drug user who loses veins after repeated needle sticks, Lia eventually lost the antecubital veins in both forearms and the saphenous vein above her left ankle after doctors frantically searching for needle placement cut them open and tied them off. During most of her hospitalizations, the arm or leg with the IV line was bandaged to a board, and sometimes she was secured to her crib as well. “Lia’s IVs were precious,” explained Neil. “The less she moved, the longer the IVs would last.” One Nurse’s Note reads: “2400. IV infusing R antecubital space with signs of infiltration @ 30cc/hr via pump. Father here. Soft restraint to L arm. 0015. Father had untied restraint & placed child on cot on floor. Returned child to bed, soft restraint to R arm. Tried to explain to father reason but difficult due to communication barrier.”

Nao Kao did not understand why the nurses had tied up his daughter. His confidence in their ability to care for Lia was further strained the morning after this note was written, when he left the hospital at 4:00 a.m. to catch two or three hours of sleep at home and returned at 7:30 to find that Lia had a bump on her forehead the size of a goose egg, the result of having fallen out of her crib during his brief absence. Not only had Lia gotten hurt while under the supervision of people who claimed to know more than the Lees about how to keep her healthy, but those people had then responded to the accident in a manner that, from the Lees’ point of view, was inexplicably sadistic. Foua and Nao Kao believed the best way to keep Lia safe and content, especially when she was ill or in pain, was to have her sleep next to them, as she always did at home, so they could immediately comfort her whenever she cried. The nurses, however, decided to guard against future falls by rigging a net over Lia’s crib and caging her inside, out of reach of her parents’ arms.

“A hospital is a scary place for any parent,” Vonda Crouse, a physician at Valley Children’s Hospital in Fresno who is on the faculty of the Merced family practice residency program, told me. “You see people wake up your sleeping child to take their blood pressure, take their temperature, check their pulse rate, and count respirations. You see them put a bag on your kid to measure the output of urine and stool. When your child is in the hospital, suddenly somebody else is feeding them, somebody else is changing their pants, somebody else is deciding how and when they will be bathed. It takes all the autonomy of being a parent away, even for folks who have had a lot of medical experience. It would be that much harder if you were from another culture and didn’t understand the purpose of all these things.”

Aside from the time Lia fell on her head, one or another of her parents was almost always present around the clock during her hospital stays. Some typical Nurse’s Notes: “Does not like to be separated from mo; relaxes when held by mo.” “Is quiet as long as mom holds her, otherwise screams most of the time.” “Child is happy & babbling, plays with toys. Mom here. Babe content.” “Being carried papoose style by fa.” “Mother here & breast feeds eagerly. Cruises sides of crib. Makes baby sounds.” “Awake, walking around to the hallway with the father then returned to the room. Father trying to put her back to sleep.” “Baby was in wagon sitting up and had generalized seizure lasting 1 min. Father grabbed her right away no injuries.” “Mother holding. No seizures this shift. Up in mom’s arms, waves ‘Bye Bye.’”

The MCMC nursing staff came to know Lia well—better, in fact, than most of them would have wished. After she was old enough to walk, whenever she was well enough to get out of bed she ran up and down the corridor in the pediatric unit, banging on doors, barging into the rooms of other sick children, yanking open the drawers in the nursing station, snatching pencils and hospital forms and prescription pads and throwing them on the floor. “You’d hear that Lia was in the ER,” recalled Sharon Yates, a nurse’s aide. “Lia, Lia. Oh please, you’d say, don’t let her up! But up she’d come.” Evelyn Marciel, a nurse, said, “Lia was a pretty girl, soft and cute and fast. Her mother wouldn’t wean her and she was real dependent on the breast. She was a little Houdini. She could get out of anything, and she’d hurt herself even if she had her wrists bound up, so you could never let her alone.” “Her attention span was real short,” said Gloria Rodriguez, a nurse. “We taught her to say bye, play patty-cake, smile, and clap hands. But she always wanted to be held, she always put her hands up to be carried because that’s what her parents did. With other Hmong families the sons are the ones who are loved. Hmong fathers say, Girl okay if die, want many boy. But this family, they wanted so much for her to live, they just adored her.” Many of the doctors remember Lia with affection because, unlike most of their pediatric patients, she was always physically demonstrative. “She liked skin,” recalled Kris Hartwig, one of the residents who took care of Lia. “Even when I was trying to start an intravenous line, she’d be going pick, pick, pick at my arm. When you asked for a hug you could always get one from Lia.” Peggy Philp said, “A lot of little kids, after being through all that, would just cry and hide in a corner or something, but Lia was very bold and she wasn’t afraid of you. So you kind of liked her because she was a character, even though you hated her because she was so frustrating and she caused you so much grief.”

Lia hated swallowing her medications. Some Nurse’s Notes: “Meds given but did not like.” “Tries to spit out Phenobarb when given. Lips pursed tightly to prevent this med given.” “Fought taking medicine even crushed Phenobarb tablets in applesauce. Spits well.” “Pt. very good at spitting out meds, given slowly with arms held & mouth puckered open.” “Spit out popsicle with medicine crushed in, had to repeat dose with strawberry ice cream this time taken well.” The Lees had an even harder time persuading Lia to take her medications than the nurses did, since they were reluctant to restrain her arms or force anything down her throat. And even when Lia was co-operative, Foua and Nao Kao were often uncertain about exactly what they were supposed to give her. Over time, her drug regimen became so complicated and underwent so many revisions that keeping track of it would have been a monumental task even for a family that could read English. For the Lees, it proved to be utterly confounding.

The anticonvulsant medication originally prescribed by Peggy Philp was Dilantin, which is commonly used to control grand mal seizures. Three weeks after her first MCMC admission, after Lia had a seizure in the hospital waiting room that appeared to be triggered by a fever, Peggy changed the prescription to phenobarbital, which controls febrile seizures better than Dilantin. Lia seized several times during the next two weeks, so since neither drug appeared to work adequately alone, Peggy then prescribed them both simultaneously. Consulting neurologists later prescribed two other anticonvulsants, Tegretol (which was originally to be used along with both Dilantin and phenobarbital, and then just with phenobarbital) and Depakene (which was to be used in place of all the previous anticonvulsants). Because lung and ear infections frequently accompanied Lia’s seizures, antibiotics, antihistamines, and bronchodilating drugs were also prescribed from time to time.

By the time she was four and a half, Lia’s parents had been told to give her, at various times, Tylenol, ampicillin, amoxicillin, Dilantin, phenobarbital, erythromycin, Ceclor, Tegretol, Benadryl, Pediazole, Vi-Daylin Multivitamins with Iron, Alupent, Depakene, and Valium. Because these medications were prescribed in varying combinations, varying amounts, and varying numbers of times a day, the prescriptions changed twenty-three times in less than four years. Some of the drugs, such as vitamins and anticonvulsants, were supposed to be given every day no matter how Lia was feeling, and when they ran out, her parents were supposed to renew the prescriptions; some, such as antibiotics, were supposed to be given for a specific period of time, and though they were prescribed only when Lia displayed certain symptoms, the prescriptions were to be finished (but not renewed) even if those symptoms disappeared; antifebrile medications, prescribed in the hope of warding off fever-triggered seizures before they happened, were supposed to be administered only if Lia had a temperature, a plan that might have worked better if her parents had been able to read a thermometer. Several of the medications were available in different forms, and were sometimes prescribed as elixirs (all of which were pink or red and came in round bottles) and sometimes as tablets (almost all of which were white and came in round bottles). Foua and Nao Kao, of course, had no idea what the labels said. Even if a relative or the hospital janitor was on hand to translate when a bottle was handed to the Lees, they had no way of writing down the instructions, since they are illiterate in Hmong as well as English; and because the prescriptions changed so frequently, they often forgot what the doctors told them. Measuring the correct doses posed additional problems. Liquids were difficult because the Lees could not read the markings on medicine droppers or measuring spoons. Pills were often no easier. At one point, when Lia was two, she was supposed to be taking four different medications in tablet form twice a day, but because each of the pills contained an adult dose, her parents were supposed to cut each of the tablets into fractions; and because Lia disliked swallowing the pills, each of those fractions had to be pulverized with a spoon and mixed with food. If she then ate less than a full helping of the adulterated food, there was no way to know how much medicine she had actually consumed.

At first, it did not occur to Lia’s doctors that the Lees would fail to administer her medications correctly. The first few prescriptions simply read “Take as directed.” In May of 1983, two months after Lia’s first hospital admission, when a blood test showed a subtherapeutic level of phenobarbital in Lia’s system, Peggy Philp assumed that the prescribed amount was being given, and raised the dosage. The next month, when the levels tested low again, she began to suspect that when Lia’s mother said she was giving the medicines as prescribed, she was either confused or lying. This was a dismaying realization. The only way to determine the optimal type and amount of anticonvulsant medications for Lia was to observe the level of her seizure activity and repeatedly test the medication level in her blood, but the test results were inconclusive unless the doctors knew exactly what was going into her system.

“Lia continued to have seizures,” said Peggy. “But was she having those seizures because she didn’t have enough phenobarbital in her blood or was she having seizures in spite of having enough phenobarbital in her blood? And if the parents weren’t giving what we told them to give, was it because they hadn’t understood or because they didn’t want to? We just couldn’t tell.” The absence of good interpreters was only part of the communication problem. Neil felt that Nao Kao put up a “stone wall” and was sometimes deliberately deceitful. Peggy felt that Foua was “either very stupid or a loonybird” because her answers, even on those occasions when they were accurately translated, often didn’t make sense. Neither doctor could tell how much of their inability to get through was caused by what they perceived as defects of intelligence or moral character, and how much was caused by cultural barriers. Neil recalled later, “It felt as if there was this layer of Saran Wrap or something between us, and they were on one side of it and we were on the other side of it. And we were reaching and reaching and we could kind of get into their area, but we couldn’t touch them. So we couldn’t really accomplish what we were trying to do, which was to take care of Lia.”

On June 28, 1983, MCMC asked the Merced County Health Department to send a nurse to the Lee home, accompanied by a Hmong interpreter, to try to improve the family’s compliance with Lia’s medication regimen. She was the first of a succession of public health nurses who were to visit the Lees over the next four years. One of the longest-lasting of them, Effie Bunch, told me, “The referrals were always the same. Febrile seizures, noncompliant mother, noncompliant mother, noncompliant mother, noncompliant mother, noncompliant mother. And the nurse’s notes were always the same too. They always started out, ‘The plan is….’ We all had a go at Lia and we all burned out.” The visiting nurses tried putting stickers on the bottles, blue for the morning medications, red for the noon medications, yellow for the night medications. When Lia was taking elixirs, they tried drawing lines on the plastic syringes or medicine droppers to mark the correct doses. When she was taking pills, they tried posting charts on which they had drawn the appropriate pie-shaped fractions. They tried taping samples of each pill on calendars on which they had drawn suns and sunsets and moons. They tried putting the pills in plastic boxes with compartments for each day. Effie Bunch said, “I remember going over there and asking the mom to show me the meds. There they would be, a little stack of bottles in the kitchen next to the tomatoes and onions, sort of like a decoration in the corner. It wasn’t hard to tell that the parents were really unhappy with the medical care. Because Lia was on such high doses, she had an appointment with Dr. Philp or Dr. Ernst almost every week and had a blood level drawn two or three days before and maybe another blood level two or three days afterwards, and there were so many changes that it was just totally mind-boggling. I don’t think the mom and dad ever truly understood the connection between a seizure and what it did to the brain. And I don’t know how else you get through to them that they have to give the meds. My general impression was that they really felt we were all an intrusion and that if they could just do what they thought best for their child, that child would be fine. They were courteous and they were obstinate. They told us what we wanted to hear. What we really knew about them wouldn’t fill the bottom of a cup.”

When Lia was between the ages of one and two, some of the notes the visiting nurses wrote on Merced County Health Department Encounter Forms were: