Once Facing a Poor Prognosis, Josie Is Now Heading Out of State for College
Josie’s diagnoses, including gastrostomy, chronic sinusitis, dermatomyositis, duodenojejunostomy, and cholecystectomy, required intravenous immunoglobulin (IVIG) infusions in addition to a GJ feeding tube with enteral feeds via food pump and other IV therapies including Methotrexate, Solumedrol, Pamidronate, hydration and antibiotics.
With three other siblings at home, Josie’s childhood was anything but quiet – and PHS was able to work create solutions to help their lives go on as uninterrupted as possible.
Bringing a Nurse to School
One consistent goal for PHS is to fit the patient’s care needs into the family’s life and not the other way around. And for Josie, that meant bringing a nurse to school while an infusion was in process – the first patient that PHS arranged this accommodation for (with many to follow). Her infusion nurse, Doreen Carson, still remembers attending kindergarten and participating in yoga and gym class so Josie could receive her infusion treatments without having to miss school. Additionally, Josie was the first patient to have parents finish the infusion in the home rather than a nurse.
“When Josie initially came on service, we were doing IVIG infusions weekly,” remembers Doreen, who was her nurse for 13 years. “Slowly we were able to decrease that to ever 2 weeks, then 3 to 4 weeks, 5 to 6 weeks, and now we’re administering it every 8 weeks – incredible progress that allows her even more time to be the teenager she is.”
Josie’s condition has improved over the years with many ups and downs along the way – and who she is today is not only a reflection of her comprehensive medical team but the support of family, friends, and the tenacious and courageous teenager who refused to give up on living life to the fullest.
From High School Grad to College Student
Despite some challenging symptoms from her diagnoses and side effects of IV therapy, Josie grew up playing hockey, going to summer camp, taking piano lessons, playing lacrosse, going on vacations, and much more. And now, after graduating from high school in May, she’s ready for her next adventure – moving to Montana for college where two of her siblings currently attend.
“When Josie was in the hospital, I would read her books all the time and one was called Brave Irene and I would change it to Brave Josie,” remembered her mom Deb. “It’s a cute tale of this girl’s tenacity and bravery while carrying a box through a snowstorm, and I came across that book right before graduation and gave it to her. I had tears in my eyes carrying the book up to the checkout as all the thoughts and emotions of knowing what she’s been through came flooding back. The toughness of this kid really stands out.”
After becoming an expert in her own medical care, nursing may be a career in Josie’s future.
“I have a few areas of interest; nursing is one of them, said Josie. “With my mom being a vet, and with all the medicine treatment I’ve received, that’s a possibility. But I’m not too concerned about that quite yet.”
“I tell her she already has a lot of very keen nursing skills, added Deb. “She can de-access herself and has a lot of insights and skills because of her background.”
Transitioning Care to Montana
Josie has identified a rheumatologist in Montana who will be able to provide ongoing care for her and has connected her team in Minnesota with him to assist in a smooth transition of care.
“Dr. Vehe at the University of Minnesota and his team, as well as PHS, have been nothing short of amazing for Josie,” said Deb. “Doreen and Mary (PHS infusion nurses) have been amazing. I can’t imagine having other nurses. The just care about her so much and they know our family so well, and they’ve always been so comforting. Knowing there wasn’t always going to be somebody different. They just feel like part of the family.”
“Hopefully her new doctor isn’t overwhelmed by the boxes of records Josie comes with,” joked Deb.
Josie will have some time to settle as she takes a gap year before starting college to settle into Montana and knows she has family close by or just a plane ride away. And if the need ever arises, her PHS nurses have volunteered to fly to Montana for IVIG infusions.