‘This isn’t a broken arm’
Warren family raising money to offset significant medical expenses
“This isn’t a broken arm.”
Tracy Fields said if she could tell people one thing about her daughter Brianna Coursey’s multiple health conditions, it would be just that.
Brianna has had Type I Diabetes since the age of five. Since then, she’s had over 100 procedures, 20 life flights, seven surgeries, and over 200 ICU hospitalizations. That’s from a gofundme campaign that was set up on behalf of Brianna and her family in December of 2017.
Four or five months ago, doctors realized part of her problem was that her stomach wasn’t emptying properly. The gastroparesis, as the condition is called, was causing her body’s ability to use insulin, even when taken properly, to fail.
“She can take as much insulin as she needs to,” said her father Jeff. “But if (her stomach’s) not emptying at the right rate that’s why everything was so bad.”
By “so bad,” Jeff means that even after having surgery to dilate her Pyloric Sphincter — the part of her stomach that allows it to empty more efficiently — her body was still unable to use insulin properly. That, said Tracy, is what she suspects caused the rapid devolution in Brianna’s condition over the past four or five months. Two weeks after having the surgery to dilate her PS, Brianna woke up to excruciating pain.
“She went from being this happy kid to screaming in pain,” said Tracy. The neuropathy — nerve pain — that can come along with unmanaged diabetes struck Brianna hard and fast, said Tracy.
And, while she was in Pittsburgh Children’s Hospital trying to get the neuropathy under control, said Tracy, Brianna began to lose both her eyesight and the ability to walk.
“I feel like there’s some component that’s being missed,” said Tracy.
Since the gastroparesis went so long undiagnosed, she wonders if there’s some other component contributing to Brianna’s current situation that simply hasn’t yet been recognized. In any case, said Tracy, over the course of that four to five months in Children’s,
Brianna’s doctors explained that what was a shocking 45-pound weight loss was due to the fact that her muscles were “wasting,” which led to her being unable to walk. In addition, said Tracy, Brianna began to lose her eyesight to the point where she’s now lost around 50 percent of her vision to diabetic retinopathy.
The other thing that Tracy said people don’t understand about Brianna’s situation is that for her things progress in such a short period of time. The course of one day can mean the difference between a hospitalization or not. Brianna has seven specialists now, at the age of 20.
She currently sees a gastroenterologist, endocrinologist, rheumatologist, nephrologist, herpetologist, urologist, opthamologist, neurologist, two pain management clinicians. She goes to occupational and physical therapy. And, although one might think that the more doctors involved in care the better, it seems to be more true that it’s just more disagreement between everyone involved and fewer answers altogether.
Tracy said the role of mother and nurse have been commingled for her since Brianna was a child. Having to prick Brianna to check sugar levels and give her shots of insulin was just one of many ways that Tracy said she’s had to deal with the frustration of not being able to be the comforting mother throughout the course of Brianna’s medical journey.
Brianna has been home from Pittsburgh Children’s Institute for just over one week.
Most of Brianna’s doctors — with the exception of one in Erie — are in Pittsburgh, meaning that she and her mother and father Jeff must travel to Pittsburgh multiple times a month.
But medical hurdles are not new for the family. While the family, who owns Fields’ Country Furniture in Warren, works 70 hour weeks when they’re home trying to make up for time lost to Pittsburgh trips and keep their heads financially above water, said Tracy, they’re swimming in a growing financial commitment to medical costs on top of the costs of owning a business and raising 11 other children.
Tracy and Jeff, she said, have adopted family members’ children and are raising their grandson as well.
“We’re proud of how hard we work,” said Tracy, “but we’re scared. We’re not always sure how we’re going to work it out.
“We’ll find a way,” she said, but it gets tricky.
The pain, said Jeff and Tracy, was the hardest thing to take. Like any parents who have a sick child, the impulse to use touch to calm and relieve pain had a paradoxical effect for Brianna.
“She couldn’t even wear socks,” explained Jeff. “She couldn’t even take a shower because the water killed her, hot or cold,” Tracy added.
“I’m her mom,” said Tracy. “I can’t even kiss her pain away anymore.”
Tracy said that at one point throughout the past few months Brianna was cringing in anticipation of her mother’s touch. What makes it hardest, she said, is people seeing Brianna “looking okay” and assuming that she’s getting better, or feeling better, or can be expected to do so.
“If you look at a cancer patient,” said Tracy, “and you can say, ‘oh, yeah, that person is really sick.’ But then you see my daughter and you’re like ‘oh, gosh, she has her nails done, she has her hair done, she has makeup on, she looks good…’ Her organs are failing she just doesn’t look as sick as this patient over here,” Tracy said. “If my daughter feels well enough that she wants to look like a young lady today, then that’s fine. But then everybody thinks she’s getting better. This is never going away.”
For Brianna, she said, it becomes a fine line to walk between not doing what she can to look as normal as possible, and feel as though she’s playing a role to fit others’ expectations for her medical situation, or doing what she can to look and feel normal but explain to people that she’s not feeling as good as she looks.
What the family is working to do now that Brianna is home is move forward and manage symptoms. Her final tasks at the Pittsburgh Children’s’ Institute, said Tracy, were to desensitize herself to the fear of being touched, now that the neuropathic pain is being managed, learn how to walk again — she didn’t walk for nearly four months while in Pittsburgh — and learn to see again. Currently the plan is to figure out how to deal with Brianna’s sight issue. She can have a laser treatment that will burn away some parts of her eyes, to the side, so that more oxygen can pass through the eye and ease some symptoms.
The problem with that, said Tracy, is that if Brianna chooses to go through with that treatment, it will be the last thing opthamologists can do for her. Ten years from now, explained Tracy, Brianna could find herself right back at square one with her vision and no further actions to take.
“This is her disease” said Tracy, who has been asked by doctors numerous times to make Brianna take a course of treatment they feel is best advised. But, Tracy said, she won’t do that.
“I’m not going to pull power of attorney” to make Brianna do something she doesn’t want to do. “It’s felt like my disease for the past sixteen years, but it’s hers, and she needs to be the one to make those decisions.
Tracy said that her job, as it always has been, remains to be a support.
To learn more about Brianna’s medical situation, visit https://www.gofundme.com/the-family-that-gives-need-our-help, or better yet, said Tracy, come to a fundraiser planned for Saturday, Feb. 17. The event will be held at Fields Country Furniture Store, 319 Pennsylvania Ave. West in Warren. The event will run from 9 a.m. to 4 p.m., and refreshments, a silent auction, 50/50, other raffles, music, and the ability to view the furniture and artwork made by Jeff for sale in the family business.
Donations will be accepted on the “Tree of Hope,” where those wishing to contribute to the family’s financial needs can write words of encouragement on an envelope, place their donation inside, and decorate a handmade wooden tree with them.
For more information on the event, or to donate to the auction, contact Sherry Stinebiser by calling (814) 221-9354 or emailing firstname.lastname@example.org.