Almost a year after Gracie-Mai Coates was born at Kootenai Health, her mother, Stephanie Coates, noticed something wasn’t quite right. Gracie’s left knee was swollen without apparent cause, at one point swelling to the size of a softball. They had recently gone swimming, and Stephanie thought it might be an infection.
After seeing multiple physicians for evaluation and spending a week in the hospital for tests and exploratory treatments, they didn’t have an answer. Her health care team referred her to Seattle Children’s Hospital for a more extensive evaluation. At 18 months, Gracie and her family finally had a diagnosis — Juvenile Rheumatoid Arthritis or RA. This was the beginning of her family’s journey in managing their daughter’s life-altering chronic illness.
Gracie, now 11, completes a complex medical regimen each month with the goal of reaching remission. Currently, she is under the care of her local pediatricians, her assigned pediatric rheumatologists at Seattle Children’s, as well as a nursing care team at Seattle Children’s outreach clinic in Missoula, Montana. From monthly lab work, infusions, therapies and follow-up appointments in Coeur d’Alene, Seattle and Missoula, her family’s lives often revolve around her illness.
Stephanie said managing the sheer volume of chart information, results, and insurance information felt like a full-time job.
“I took it upon myself to keep her file with me at all times because there were so many hands in the pot. If I forgot something, or if something was lost, it’s just more waiting; maybe for days,” she said. “I felt like I had become her medical social worker.”
Gracie’s current treatment plan calls for infusions every four weeks, which would have ordinarily required her family to travel to Seattle or Missoula. However, last November, the team at Seattle Children’s and Kootenai Health were able to put together a treatment plan so Gracie could complete the infusions locally at Kootenai Health’s pediatric department. When the teams began this collaboration, they were reviewing her results, chart notes and care plans with cumbersome faxes and lengthy phone calls.
But there was a change on the horizon.
In March 2022, Kootenai Health completed a system-wide electronic health record upgrade to a new software called Epic. This update eliminated 11 separate electronic health records in use at Kootenai Health and put every test result and chart note into a single medical record. Even better, the Epic software is used at a majority of health care institutions in the nation, including Seattle Children’s Hospital. This means Gracie’s information can be seamlessly and safely shared between providers, across the street or around the globe.
“There can be a frustration to have to repeat your story 12 times to 12 providers. With Epic, patients get to be patients and providers can see every note from every encounter around the country,” said pediatrician Vanessa Carroll, M.D., medical director of pediatrics at Kootenai Health. “Epic, and the patient tool, MyChart, has been a significant improvement for our patients and their parents.”
For Stephanie, having everything in one place meant she could move from being a focused patient advocate, to a mom.
“It gave me an opportunity to comfort Gracie-Mai and keep her distracted. Now, there’s just not that stress of making sure it’s all correct; that feeling that it all falls on me, and if I miss something, it will negatively impact us later on,” Stephanie said. “With this, everything is in one place. It’s nice for Gracie-Mai that I am able to just focus on her.”
Being able to coordinate this service locally, has been a blessing for Gracie’s family.
“They treat Gracie like a hotel guest. They really care. Gracie loses enough school as it is, and last time, everything just went so smooth,” Stephanie said. “They really try to make sure they have a good rapport and that she is comfortable. She doesn’t dread going – it’s been good each time.”
The team at Kootenai Health not only helped Gracie-Mai during her treatments, but also helped the family navigate the complexities of billing and insurance.
“These treatments are a whole lot of money every month. It’s extremely difficult to navigate with everything else going on. We were looking at refinancing our house, selling a car – it was going to be financially devastating,” Stephanie said. “The nursing staff, and especially our social worker, was phenomenal. By the time we left Gracie’s last treatment, our social worker had us enrolled in a financial assistance program from the drug manufacturers that was going to help cover the costs.”
This service available locally, and the seamless connection between providers, enables Kootenai Health to better serve the needs of our rapidly growing region.
“It can be challenging at times to have a child with a chronic illness. So being able to provide this service is a huge benefit for the community,” Dr. Carroll said. “And having everything in one place with Epic means we are truly one connected team, with patients at the center of it all.”
Connect with Kootenai Health’s MyChart
What is MyChart?
MyChart gives you secure on-line access to your medical record. You can use the Internet to help manage and receive information about your health care. With MyChart, you can:
- View your health summary from hospital or clinic visits
- See your test results as soon as they are available
- Request prescription renewals
- Send and receive private messages with your care team
Is there a fee to use MyChart?
MyChart is a free service for our patients.
How do I sign up?
You will be given a MyChart activation code during your next clinic visit. Use this code to log in and create your own username and password.