Hospitals should be arranged in such a way as to make being sick an interesting experience. One learns a great deal sometimes from being sick.

—Alan Wilson Watts, The Essential Alan Watts

At the time of his July 2013 admission to the hospital, Pablo Garcia was 16 years old, a tenth grader at a high school in Stockton, California. He hoped to be an auto mechanic one day. At about 85 pounds, he was quite small for his age, a consequence of his immune disease and the havoc it had played with his digestive system. Stockton is a two-hour drive from San Francisco, but with its depressed, farm-based economy and its high crime rate, it’s a world away from the sparkling City by the Bay.

While Pablo has a primary care doctor in Stockton, the city lacks the resources and specialists of UCSF, so he’s been coming to San Francisco for care since he was a child. Pablo’s mother, Blanca, is fiercely protective of her children, especially Pablo and the younger Tomás, both of whom have NEMO syndrome. Whenever Pablo or Tomás is in the hospital, Blanca plants herself in the room, partly to lendsupport, but also to be a final set of eyes and ears. Hospitals, she knows, can be dangerous places. As luck would have it, on the night of July 26, Pablo and Tomás were both hospitalized at UCSF Medical Center.

Since Tomás was the sicker of her two children, Blanca decided to spend the evening in his room, one floor up from Pablo’s. But before leaving her older son’s room, she reminded him that he would be taking a lot of medicine to get him ready for the colonoscopy. There’s a movement in medicine to practice in a more “patient-centered” way, a major part of which is to involve patients in their own care. One arm of this movement highlights the role of patients and their families in protecting themselves, such as having patients ask their doctors and nurses whether they have washed their hands. While many (including myself) are skeptical about how effective this is and whether it places an inappropriate burden on patients and their families, there are clearly times when patients or their loved ones are highly aware of their treatment plans and can participate meaningfully in catching errors.

In the midst of doing the bar-code scans, Levitt decided to ask her young patient about this strange dose of Septra. Pablo was used to taking unusual medications, and on top of that, he remembered his mom’s parting words about the meds he’d be given for his colonoscopy prep. So Pablo told Levitt that the Septra dose seemed okay. Reassured, the nurse handed the half-filled cup of pills to her patient and he began to swallow them, some a handful at a time. Levitt remembers thinking to herself, “What a good kid, what a trouper.”

One of Pablo’s last memories before his seizure was of texting a friend. “They’re having me take an awful lot of pills and drink an awful lot of liquid,” his message said. About six hours later, the teenager blacked out, and his arms and legs began jerking. Luckily, the Code Blue team was able to revive him from his brief period of apnea, and he recovered in the intensive care unit over the next several days.

On the morning of August 5, ten days after the overdose, the doctors restarted Pablo’s Septra. This time, the medication was ordered as “Septra, one double-strength pill twice a day”—not in mg/kg—in the computer system. Try, if you can, to imagine what it feels like to be Blanca Garcia. Her two sons are constantly battling infections—sometimes painful skin infections that weep, itch, and blister; other times pneumonias that cause her children to cough and gasp for air. Their digestive systems are never normal. There may be diarrhea one week, nausea the next, and bleeding the week after that. They are malnourished; Tomás must receive his nutrition through a tube threaded into his small intestine. Blanca is also raising two daughters, who, as females, were protected from the mutation that causes NEMO syndrome.

And there is always the memory of her third son, who died at age six from the syndrome, a constant reminder of the risks that may lie ahead for her two boys. Last year alone, Pablo and Tomás were hospitalized at UCSF a combined total of eight times, and they had an additional 20 clinic visits. Remember, each visit and hospitalization involves a two-hour drive from Stockton to San Francisco, then back again. Any time either of her children is hospitalized, Blanca Garcia is there, ready to help and to question. (In fact, I spoke to her during one of Tomás’s hospitalizations in 2014, about a year after the Septra overdose. Pablo was there too, lying on a cot by his brother’s bedside.) She is aware that some of the doctors and nurses see her as hard to please, maybe even “difficult.” To her, she is simply advocating for her children.

Pablo Garcia is fine today, although Blanca continues to worry about long-term effects from the 39 Septras. The doctors have reassured her, but—after the medication error that nearly killed her child—she doesn’t really believe them. “It’s exhausting,” she said, “to feel like you can’t trust people.”

Reference Source:

Wachter, Robert. The Digital Doctor: Hope, Hype, and Harm at the Dawn of Medicine’s Computer Age (Business Books) (p. 168). McGraw-Hill Education. Kindle Edition.

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