During the Winter of 2014, our active, smiley 5 year old son Andrew became ill with a childhood virus. His illness quickly and unexpectedly worsened, and led to life-threatening respiratory failure that required an emergency medivac flight from our local hospital to Nemours A.I. Dupont Children’s Hospital in Wilmington, Delaware. Upon further testing at Nemours, we learned that Andrew had developed pneumonia in both lungs and H1N1 flu. He required advanced life support for several days until his medical condition could be stabilized.
As we grappled with the sudden onset of a life threatening illness, we stayed devotedly at his bedside, prayed tirelessly, and relied on the support of our family and close friends to care for our 9 year old daughter Samantha. Within a few days, Andrew’s medical team was able to inform us that his condition would improve, however, they were uncertain of the time frame it would take for him to recover enough to return home. It was still too early for his medical team to give us any indication of how long this hospitalization might last or what Andrew’s road ahead would clearly look like. Andrew was still sedated and requiring ventilator support at that time, but we began to think…What happens when he awakens? He will likely be disoriented to where he is and what has happened to him. And since children have limited capacities to understand time concepts in their regular daily environments, much less a hospital setting where the hours, days and nights all blur together; how would we answer our child’s ever pressing request, “MOMMY, WHEN CAN I GO HOME???!!!”.
Drawing on my experience as an Occupational Therapist, working with children and adults with disabilities, and my intense desire to communicate to Andrew that he was improving and would get home, I called my close friend Stephanie and asked her to make Andrew a “visual road map”. Andrew loves cars and trucks. I asked Stephanie to draw a road connecting a symbol of the hospital and a picture of our home. I asked her to place Velcro along the road and then apply Velcro to a small truck so we could move his vehicle along the road in correspondence with his progress towards going home. We had no idea that this idea or concept would draw such positive feedback from Andrew’s medical team or the many friends and family that were following Andrew’s progress. Most importantly, Andrew’s Road Home became a valuable communication tool to keep him motivated and encouraged towards the goal of “going home”. It helped to engage Andrew with his medical team in child-centered discussions regarding his progress. His medical team began to take the initiative to move his truck further along his road during their daily rounding. And we were beyond excited when Andrew moved his truck to the end of his “road home” as we pulled into our driveway to finish his recuperation in the comfort of home. There is truly NO PLACE LIKE HOME for a child and family that has been trying to cope with and heal from a childhood illness or disease in a hospital setting.
The Get Well Map Foundation was inspired by the deeply personal experience of Andrew’s hospitalization, and the desire to ease the intense stress and anxiety experienced by other children and families during medical challenges.