Haines and Colter Gauzens missed their dad. It had been more than two weeks since they'd last seen him — an eternity in kid years. "When's Dad coming home?" the 9-year-old twins kept asking their mother, Isis. "I'm not really sure," she'd tell them. "Dad is really, really sick."
Dad — Joe Gauzens — has Erdheim-Chester disease, a rare disorder that can cause a host of symptoms throughout the body. Joe's primary symptom is chronic, debilitating pain that keeps him at home most of the time. But he'd developed pneumonia, and was lying in the intensive care unit at Mayo Clinic's Arizona campus. Isis wasn't eager to take the couple's sons to the ICU, but as the days passed she decided it was time for a visit. "I would never have let the kids into the ICU, but Joe had been there so long," she says.
Before she took Haines and Colter to visit their father, Isis wanted to prepare them for what they'd see. To do that, she decided to speak to them in a language they'd understand: Legos.
Together, Isis and the boys built a replica of Joe's room in the ICU. There's a panel with buttons, representing his medications; a tower representing his monitor; and even a bed that tilts, just like the rotating bed that was used to help reposition Joe. The model also showcases the many, many staff involved in Joe's care. They're represented by Lego mini-figures inside Joe's room and standing watch, like tiny guardians, on top of the model's walls. At the center is Joe himself, outfitted in a dual-purpose cape. "The boys wanted their dad to be a superhero," Isis says. "It's also their interpretation of a hospital gown."
When Isis brought Haines and Colter to the ICU, the Lego model came with them. It was placed near a glass wall in Joe's room, along with a thank-you sign for the staff, including Ayan Sen, M.D., an intensivist, and nurse Natalie Marquez, who had done so much for Joe.
The model was a big hit in the unit, with staff members stopping by to admire the craftsmanship and snap photos of the family's efforts, say Shae Saint-Amour, and Matt DeMarco, supervisors on the unit. "We were amazed by the level of detail," Saint-Amour tells us, adding that staff also appreciated that the model "didn't just show all the technology used to treat Mr. Gauzens, but also included the many people who worked to save him." The teaching tool was effective, too. "Isis did an amazing job preparing the boys and explaining their father's condition," Saint-Amour says. "We were impressed by how insightful the boys were."
Seeing the replica — and the boys who created it — served another important purpose. "The model helped the entire critical care team to remember that our efforts helped provide more time for the family to have with Mr. Gauzens," Saint-Amour says. "It is a great reminder of why we do what we do."
We probably don't need to remind you to leave a comment below. Then, use the social media tools atop this page to share this story with others.