For the past six weeks, a Louisiana mom has been living in and out of Nebraska Medical Center taking care of her terminally ill 11-year-old daughter, who received a second intestinal transplant in December.
Four days after her birth, Kylie Bush was diagnosed with Small Bowel Syndrome, a disorder that causes problems with the intestine.
"When she was born, her small intestine was twisted up inside and they were not able to detect it...she lost her entire large and small intestine,” says Joan Broussard, Kylie’s mother.
Kylie had her first small bowel transplant at Nebraska Medicine back in 2007 when she was 18 months old.
This past December, Kylie returned to Omaha from Louisiana to receive her second transplant, but this time needing three organs: a liver, small bowel, and pancreas.
“The transplant was her only shot at survival because until she received that transplant, she was only kept alive by IV nutrition,” says Broussard.
The surgery, which cost 2.3 million dollars, requires 6 months to a year of recovery time.
“I’ve learned how to take care of her, to be her caregiver, and our life is definitely not what you would call normal, But I have tried to make it as normal as possible for her. We have our normal,” says Broussard.
Broussard spends her days with Kylie going to labs, doctors’ appointments, therapies, and playing board games, and even lives at the hospital in a room offered by the hospital for long-term patients’ families.
“It’s a small room but it has everything we need and this is where I come to unwind and I like it because I’m only two minutes away from her if she needs something,” says Broussard.
Every two weeks, Broussard trades with Kylie’s dad, and makes the 15-hour drive back home to Louisiana, where she works at Kylie’s school.
“The good thing about when I’m gone, I still get to FaceTime with her and her teachers and her friends get to talk to her and she just loves that. She’s such a social butterfly so having that communication makes such a difference in her recovery,” says Broussard.
Broussard, who has three other children says traveling 900 miles back and forth can have its tolls, both financially and for her family.
“I have my moments where I have to wipe the tears and gather things before I go to see her because she can read me like a book and she knows instantly when something is wrong,” says Broussard. “I also have a senior back home and it’s her senior year of high school so I feel guilty because I’m missing out on her senior year.”
Broussard says the insurance pays for some of the medical expenses, but adds that all of Kylie’s procedures are expensive. Traveling back and forth for the family also adds to the costs.
”We’re responsible for transportation, for food, for lodging, and you know, when you live 900 miles away, the cost accumulates. You think you can plan for it all but there are always things that you didn’t plan for and of course, there’s always the unexpected. ”
Broussard says for statistically, intestinal transplants only work for about three years, but says she hopes Kylie’s strong will to live and the community’s prayers keep Kylie from becoming another statistic.
“We don’t really know how long we have with her so we don’t count our days. She’s definitely my hero and a survivor and we’re going to get through this.”