Chronic illnesses didn’t take a breather during the stay-at-home orders. Just ask Kenny Day, who’s battling Crohn’s Disease.
Kenny, 12, of Struthers, and his parents made no fewer than 5 necessary visits to the Akron and Beeghly campuses while most of the state was under quarantine. Three were for overnight stays.
“Nobody wants to be in the hospital during COVID, but the staff made us feel very comfortable and safe the whole time,” said Kenny P. Day, his father.
Akron Children’s Hospital recently reopened many services it had to temporarily shut down due to the pandemic; in particular to conserve PPE and maintain capacity for outbreaks. Hospital officials are confident that facilities can open safely with new precautions and processes in place.
“Our top priority is the safety of our patient families and employees, and preventing the spread of the virus. We are also carefully watching the inventory of PPE, including gowns, masks, gloves and other supplies, given the global shortages,” said Lisa Aurilio, chief operating officer, Akron Children’s Hospital.
As part of his treatment for Crohn’s, Kenny has infusions every 5 weeks aimed at proactively improving his symptoms. The 4-5 hour procedures take place on-site for Kenny at nearby Beeghly campus.
His family has experienced the new patient protocols and felt well-protected.
“Our minds were at ease at all times, even during the stays in the hospital,” said Nichole Day, Kenny’s mother. “They really tried to make it as easy and minimally invasive as possible. The staff is fantastic.”
More than a bathroom disease
Kenny was diagnosed at age 9 after more than a year of experiencing symptoms and undergoing various tests, including 3 colonoscopies. During that time, his weight dropped from 85 pounds to 55. He became a picky eater and he suffered from extreme stomach pain.
Crohn’s is an inflammatory bowel disease with no known cure.
“It’s a misnomer that young people don’t get it,” Kenny’s dad said. “With Crohn’s, the body is attacking itself. Kenny’s cells don’t realize it’s his own cells. It wears him down. It causes body soreness, fatigue and debilitating stomach pain. He says it’s like scissors cutting his insides.”
Kenny’s experiences with the disease and its side effects have involved specialists in gastroenterology, hematology/oncology, psychology, and allergy and immunology. He’s expected to continue treatment the rest of his life.
“With this disease you’re lucky to be good one day, and in the ER the next,” Kenny said. “It’s not just a bathroom disease.”
GI doctor gives family comfort
The family credits the attentive care and compassion from the many doctors and nurses they’ve seen for helping them cope with Kenny’s illness. Of particular note was the efforts of GI specialist Dr. Madhura Phadke, who prescribed Kenny’s most effective medication and helped him get control of his symptoms.
“Dr. Phadke is amazing,” Nichole said. “She listened to us and was proactive. She taught us so much about Crohn’s.”
Kenny is homeschooled and will be a 7th grader in the fall. He’s in a gifted/talented program for language arts and enjoys the Boy Scouts, acting in community theatre and the company of his 6 birds and 3 dogs.
“Every day with them is a joy,” he said. “They can tell when I’m having a flare up and they’ll come up on the couch with me. Even my parakeet, Stella.”
Kenny’s father says words can’t explain how good Akron Children’s Hospital can take care of kids.
“This is the place we needed to be,” he said. “This entire system is phenomenal. You can tell the level of care that the doctors put into their jobs.”