PICU Experience at the Middleman Family Pavilion: Louie’s Story
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Thirteen-year-old Louis (“Louie”) was born with thoracic insufficiency syndrome, a rare congenital condition requiring highly complex care, including multiple surgeries each year. He sees 12 specialists at CHOP and is a regular at the Philadelphia hospital. “Everyone knows Louie,” says his mom, Cheryl.
After a recent surgery to repair a fractured leg, Cheryl asked if Louie could be transferred to the Middleman Family Pavilion in King of Prussia, which is much closer to the family’s home. When they arrived in the PICU, Cheryl was thrilled to discover Louie would have the same care team as in Philadelphia. “He had the same attendings, and most of the same nurses and therapists,” says Cheryl. “These are the same people who have been taking care of Louie since he was 6 months old.” Though Louie’s primary surgeon was still in the city, members of his team saw Louie at the Middleman Pavilion. Says Cheryl, “They were in constant contact. It was the exact same care we were getting in Philadelphia.”
Louie spent four days recovering in a private inpatient room. Cheryl worked in the room’s separate caregiver area and easily travelled back and forth between home and the hospital. “If you have the opportunity to be in a hospital closer to home, it’s always going to be better for your family,” she says.