Every day during rounds Jeremiah*, a toddler with a congenital illness and severe developmental delay who required intense care at home, lay silently in his hospital crib, back arched, thin limbs still. In the year that I had known him I don’t think he ever looked at me, though I was fiercely dedicated to him and his family. I also don’t know if he was able to remember me from one day’s rounds to the next or from admission to admission. He certainly knew nothing of the time I spent outside the room advocating for him and his parents. When he was at home he had many appointments, continuous feeding through a tube in his stomach, medications given on a schedule, and needed constant attention to keep him well. Jeremiah’s family, though, was trapped in the web of poverty and circumstances that ensnares so many of my patients, and they weren’t meeting his complex needs. During each hospital stay I tried to get help for them but their challenges were convoluted and impenetrable.
As a result, the last day of his last hospital visit was different. Continue Reading