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At 11-months-old, Cici Fischer choked on a piece of fruit. Her mom, Jenny Fischer, couldn’t dislodge it. She called 911. During the 11-minute ambulance ride from the Fischer’s home to the nearest hospital, Cici’s heart stopped.
Within the hour, a helicopter airlifted her to Children’s Hospital Colorado. Doctors in the Pediatric Intensive Care Unit managed to stabilize her, but they weren’t sure she’d recover any brain function.
Cici suffered hypoxic brain damage, which left her with epilepsy and functional quadriplegia. Her brain doesn’t communicate with her muscles well, and she struggles to keep her airway open enough to breathe on her own.
Eight years later, she remains severely limited in most aspects of her life. She’s unable to speak or move; she requires a gastronomy tube to eat and a tracheostomy to breathe.
“We went from having a typical child to having a severely disabled child overnight,” says Jenny.
“She has a lot of needs,” says Karen Kelminson, MD, Cici’s general pediatrician at the Special Care Clinic at Children’s Hospital Colorado. “Multiple subspecialty physicians are involved in her care — it’s a whole medical team.”
On a regular basis, she sees neurologists, otolaryngologists, orthopedic specialists, rehab specialists and physical and occupational therapists. The Fischer Family’s private medical insurance — excellent coverage, by most standards — pays for only a fraction of that care. For the rest, they carry supplemental Medicaid.
Medicaid covers 30 million children nationwide. At Children’s Colorado, nearly half the patient population has some form of Medicaid.
Now, as lawmakers continue to consider potentially drastic cuts to the program, the Fischers face a very real dilemma.
“We hit our out-of-pocket maximum by January 11 this year,” Jenny says. “There’s so much our insurance doesn’t cover, and a lot of it is really, really important.”
Cici needs a lot of physical therapy to keep her joints and muscles loose, and to prevent painful muscle shortening. She needs supplies for her g-tube, including pumps, formula and the tube itself.
Because she can’t move on her own, Cici needs a custom-made wheelchair to support her skeletal structure. Because she’s still growing, she needs a new one roughly every four years. The wheelchair alone costs about $25,000. Insurance will cover about $2,000 of that.
Most important to Jenny is the private duty nurse Medicaid pays for so that Cici can go to school a few hours a day, a few days a week.
Legally, because of her tracheostomy, only a registered nurse or a licensed practical nurse can care for Cici, but no school has the nursing staff to cover that. Insurance doesn’t cover any of that expense. Without Medicaid, the Fischers face the choice of putting Cici in a potentially unsafe situation or pulling her out of school altogether.
“Cognitively, she’s in there. She can keep up,” says Jenny. “We have a lot of medical stuff, but overall she’s really stable, healthy, doesn’t have a whole lot of hospital stays or chronic problems. We do almost everything at home. She’s able to enjoy her life.”
And she does. She goes to church. She’s in Girl Scouts. She can smile and giggle and communicate with a communication device (also not entirely covered by insurance, but by Medicaid). She still needs help with almost everything — eating, moving, breathing — but when she gets that help, says Jenny, “She does great.”
“What we want,” she adds, “is to keep it that way.”