Long hospital stays can be challenging for young patients and their parents. Carlene Landguth knows this all too well.
For the past seven years, Landguth and her family have traveled across South Dakota and Minnesota seeking care for her daughter’s chronic pancreatitis. Often during those trips, Landguth must choose between caring for her daughter, Quin, or taking care of herself.
When the Blythe Brenden-Mann Wellness Center opened last year at University of Minnesota Masonic Children’s Hospital, it was a revelation for her family. Designed to support the parents and family members of hospitalized children, the multi-purpose Wellness Center includes a workout room, a salon and an integrative therapy area. The center is located on the fifth floor of the hospital itself—which is important for parents like Landguth. The center is supported by the Blythe Brendan-Mann Foundation, LifeTime Fitness and Intelligent Nutrients.
“Instead of leaving the hospital for a run or going back to the hotel to work out, I was just down the hall from my daughter,” she said. “It makes all the difference in the world. It really does.”
Pancreatitis occurs when the pancreas, which produces insulin and helps the body digest food, becomes inflamed. When Quin began experiencing symptoms, the family turned everywhere for help, but local doctors and a specialist in Denver couldn’t help. Eventually, Carlene emailed several specialists across the country, including University of Minnesota Health Gastroenterologist Martin Freeman, MD, who specializes in pancreatic care.
"I had a return email by 9 a.m. the next day,” Carlene said. “I had briefly told him what was going on [with Quin], what I suspected. “He just very straightforwardly said, 'You bring her to me and I’ll fix her.' The lights had opened up. For the first time in two years, we had hope."
Quin and her family first traveled to University of Minnesota Masonic Children’s Hospital in 2013, Since that time, the family has been in and out of the hospital five times as Freeman and other specialists work to manage Quin’s condition and reduce her chronic pain.
Endoscopic therapies helped for several years, but eventually the pain of chronic pancreatitis caught up with Quin. In 2016, she underwent a total pancreatectomy and islet auto-transplant (TP-IAT) performed by Transplant Surgeon Srinath Chinnakotla, MD, and a multi-disciplinary team of care providers. During the procedure, a team removes the patient’s pancreas. Without a pancreas, which controls blood sugar levels, the patient would develop diabetes. To solve this problem, experts isolate insulin-producing cells from the removed pancreas, and put them into the liver where they can continue to provide insulin.
While a TP-IAT is very effective at relieving the pain of chronic pancreatitis, patients often need continued follow-up care. Pediatric Nurse Practitioner Marie Cook, APRN, CNP, MPH, CCTC, has coordinated Quin’s care, which includes pediatric pain management, endocrinology, and gastrointestinal specialists.
Quin didn’t like being away from her parents during those repeated hospital stays, Landguth said. Before the Wellness Center opened, it was difficult for Landguth and her husband Mark to break away for 30 minutes to talk each other or exercise.
“It used to be a constant conversation about whether we could sneak away,” she said. “It was like this puzzle every day to try and figure out how to get our workouts done.”
Now, the Landguth family doesn’t have to worry as much during hospital stays. During a recent stay, Landguth brought her daughter down the hall to show Quin the Wellness Center. The close proximity of the center helped reduce Quin’s anxiety. Landguth used the center’s treadmill and elliptical, and performed Pilates and Insanity workouts in the space. Those workouts, she said, are crucial tools for stress reduction. Landguth also used several integrative therapies offered in the space, including massage and acupuncture services.
Parents with children in the hospital need to ensure they’re receiving adequate self-care, Landguth said.
“We are the point of the pyramid,” she said. “If mom and dad are OK, that trickles down to the rest of the family. If we’re not okay, the whole boat sinks.”
Landguth and her family have been in plenty of other medical centers. She said the Blythe Brenden-Mann Wellness Center at University of Minnesota Masonic Children’s Hospital exemplifies the hospital’s “whole family” standard of care.
“It gives you this continued feeling that this hospital is concerned about the entire family—and not just the patients,” she said. “We are so grateful as parents and family members that we are not forgotten in the process.”