. She knew the names of all their children, and her size at five feet one was less pretentious than that of Peggy and Neil who were both quite tall. She was able to make house calls and this kept the lines of communication open, and she used May, the Lees’ most Americanized daughter, as her interpreter. Her empathy for them may have been deepened by two factors: she understood what it was like to live with a chronic illness, because she had asthma; she admired the closeness of Hmong families, because her relations with her own family, who were fundamentalist Christians, had been strained for years, because she was a lesbian. She also though Lia, in spite of her behavioral problems, was a delight, and she enjoyed her time with her. Her involvement in the Lees problems rapidly escalated to an obsession, and to Peggy and Neil, she became “a large pain in the ass.” She harassed until she got what she felt the Lees deserved and was the best patient advocate Lia could have ever had.
One of the things Jeanine arranged was to have Lia bused three days a week to the Schelby Center for Special Education. Here, Lia’s teacher, Sunny Lippert, recalled that Lia was very spoiled. Her parents saw her as a goddess or a princess and did everything for her, including special foods and carrying her everywhere. One of the first rules Sunny laid down was that no one could pick up Lia. She also posted a daily schedule for the Lees, believing some of her problems were the result of a lack of daily structure. Of course, the Lees never really were able to follow it, because they were oriented to the cock-crow system rather than the clock. Nonetheless, Jeanine achieved stunning success in getting the Lees to administer Lia’s medication correctly. During her first four months at home, she only had one seizure. She attributed this success to the use of Depakene and no other seizure medication. The Lees thought it was because of the shaman they had taken her to in Minnesota.
Then, in September of 1986, Lia fell off a swing at the Schelby Center and went into status epilepticus, the condition dreaded by all her doctors, in which her seizures continued one right after the other. There were no intervals of consciousness. She was found to have adequate levels of Depakene in her system so non-compliance was not the issue. The Lees believed that the teacher had made her fall from the swing, and when she became afraid, her soul went away, and she became sick again. It was Lia’s fourteenth admission to MCMC, and it was by far the worst. Besides the seizures, she aspirated food into her lungs and had to be intubated. The breathing tube irritated her trachea, and when they removed it, she still had a lot of difficulty breathing. So they re-intubated her and then she got an unusual infection of her airway. Lia’s parents had to go along with a lot of invasive procedures and Nao Kao remembered it as a time when she had a lot of plastic all over her. The infection in her trachea was so unusual that Neil and Peggy co-authored an article for the Pediatric Infectious Diseases Journal. Not every doctor would have been willing to publish the fact that the tracheal tube had been inserted incorrectly, but Neil would rather expose the case of an inexperienced resident if it would help other doctors who might come across the same infection in another child. Also, this time the author was struck by the fact that Nao Kao was actually right: the hospital had made Lia sicker!
Only three weeks after Lia was discharged from the hospital, she was readmitted, despite adequate levels of the medication, with severe seizures and fever. The Depakene was no longer working. The doctors felt they were grasping at straws. They even considered surgery to cauterize her brain. By early fall, they began to get this feeling of doom. Neil said that they felt like there was a giant snowball coming down the mountain, and they were trying to hold it up there, but it kept pushing them down. He told Foua and Nao Kao that Lia’s seizures were getting worse, and that someday she might have one they couldn’t stop. He felt that Lia was going to die right before his eyes, and it was just a matter of when.
The poignant aspect of this chapter is that the Lees were finally able to grasp how to medicate Lia, and she had as period when she turned four where she only had one seizure. Then, their world turned upside down again when she fell from the swing. Now Lia’s death is, in the eyes of the doctors, inevitable.