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The First Chronically Sick Child

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Joey was the first chronically sick child that I have ever worked with. He is two years old and since he was born he has spent the majority of his life in and out of a hospital. His mother and father, parents of three other children, have moved homes to be closer to medical help in the case of an emergency. They had to make sure that their health insurance would cover the ambulance’s driving distance from their house to a hospital. They had to make sure they lived near a police station in the case of a power outage, which would prohibit Joey’s life sustaining medical equipment to work. Joey has tracheal stenosis, diagnosed at 3 weeks of life. A tracheostomy was placed at diagnosis and now 2 years later he still lives with it. He recently had laryngeal surgery but still no one knows when the day will be that he will live without a tracheostomy. Because Joey has been in and out of a hospital, at 2 years old he has already developed C. difficile and laryngitis. Joey’s mother’s pregnancy was healthy and full term. The parents had no forewarning of the medical battles they would face. I had the privilege of learning about Joey through the eyes of his father, at his bedside for my entire shift on that Monday morning. A lot of things were racing through my heart when I first walked in to introduce myself. What does a chronically sick child look like? Would I know what to say when my patient can’t communicate back to me? Would I know what to do with a tracheostomy, vital for

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