How home infusion became a “game changer” for patient with chronic autoimmune disease
Brekken Larson, 11, has juvenile dermatomyositis (JDM), a rare, muscle-weakening autoimmune disease. He was diagnosed when he was 4, after he woke up from a nap at preschool and had difficulty walking. His journey eventually brought him to M Health Fairview Masonic Children’s Hospital, where pediatric rheumatologists collaborate with other medical specialists to tailor care to each child’s specific needs.
To manage Brekken’s symptoms, ranging from fatigue and weight loss to skin rashes and muscle pain, his care plan included intravenous immunoglobulin therapy (IVIG) every six-to-eight weeks at M Health Fairview Masonic Children’s Hospital. For five years, Brekken, his mom, Jessica, and often his little sister, made the hour-long trip from their home in New Richmond, Wis., to the Twin Cities for seven-hour infusion appointments. For a once-active boy, the treatments were long and boring, but the family remained hopeful that Brekken’s JDM could be managed by the therapy, or even go into permanent remission.
When Brekken turned 9, his dad Nick’s insurance company suggested they explore infusion therapy at home through Fairview Home Infusion.
Fairview offers more than 40 home infusion services for chronic and acute needs, such as cancer, multiple sclerosis, inflammatory conditions, and autoimmune diseases like Brekken’s. Fairview Home Infusion is one of the largest and most experienced health system-owned home infusion businesses in the country, serving 3,000 unique patients a month.
Despite initial hesitation to deviate from their established routine, the Larsons decided the convenience of Brekken receiving care from the comfort of home was worth trying something new. Brekken’s care team at Masonic Children’s Hospital supported the change, too.
“As much as we love to see kids like Brekken in the clinic and hospital, our ultimate goal is to get them home,” said Tim Affeldt, vice president of specialty and infusion operations at Fairview Health Services. “When our patients are able to receive care in the comfort and convenience of their home, it fosters a sense of empowerment and autonomy, which is crucial in their healing journey.”
Home infusion revolutionizes patient-centered care
Under the care of Jodi Rohr, RN, an infusion nurse with Fairview Home Infusion, Brekken’s first IVIG home infusion session took place in the familiar surroundings of his own toys, computer, video games, favorite foods, and bed. The family’s collective response? “Why didn’t we do this all along?!” Jessica called home infusion a “game changer,” and noted an immediate change in Brekken’s demeanor during his first at-home session.
Nick, employed asa power plant operator in Stillwater, used to miss spending time with Brekken on the days he had to travel to the infusion center. Since switching to home infusion, Brekken and Nick have been able to spend more time bonding together over their favorite video games.
Over the last two years of home infusion, Brekken and Jodi have also formed a strong bond through their witty banter and jokes. Brekken’s become knowledgeable with his IVIG routine, even helping Jodi with setup and takedown. Though Brekken’s condition isn’t in remission yet, Jodi says she’s honored to be part of his health journey and will be there to celebrate with him, at his home, when the time comes.
“Brekken has been through so much, yet he has such great courage and strength,” said Rohr. “Even though infusion days aren’t fun for him, he always makes the best of it and has responded extremely well to treatment. I can’t help but think his positive attitude has something to do with it.”
