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HEYWORTH — While Samantha Trost read to her brother, Leo, their mother positioned Leo so his nurse could feed him through his G-tube as their father looked on.

"Leo runs the show," registered nurse Jen Sikes said.

Through the G-tube (gastrostomy tube) inserted into his stomach, Leo, age 22 months, received nutrition in the form of a protein, vegetable, fruit, fat and milk that his parents, Kate and Terry, blended for him.

Before and after his meal, Jen and Kate gave him nebulizer treatments through a tracheostomy -- an incision in his windpipe -- to thin out his secretions. A pulse oximeter — with a sensor attached to his foot — measured the oxygen level in his blood.

"He's on it 24/7," Jen said.

Leo's bedroom in the Trost home includes a file cabinet filled with medical supplies, a ventilator to help him breathe at night and an emergency bag filled with supplies and equipment for the few times when Leo leaves the home.

Raising a medically fragile child is difficult. It's harder when some of his care is threatened by the ongoing state budget impasse.

Leo's medical diagnoses — including Pontine Tegmental Cap Dysplasia, a rare brain disorder — mean that he needs a trach and G-tube and 24/7 specialized care. That's available either in a hospital or at home by his parents and nurses who have been specially trained.

Kate, an accountant, and Terry, an information technology manager, have medical insurance that pays for $8,500 — or two weeks — of nursing care a year.

The remaining 50 weeks a year are covered by a state waiver funded through Medicaid.

But a 16.75 percent temporary cut to Medicaid reimbursement in May and June to help the state complete the fiscal year nearly cost Leo his nursing care. The only reason it didn't is because the four Accurate Home Care nurses, including Jen, who tag-team to provide Leo's care (along with his parents) took a 16.75 percent pay cut.

Now, with no state budget in sight, Kate and Terry and Leo's nurses are worried that another cut is inevitable.

A long-term cut would mean that the nurses could no longer afford to provide the care. That would mean the Trosts would need to move Leo to a Chicago hospital where costs would be higher and the family would be separated. Or the Trosts would have to quit their jobs to care for Leo, meaning they could qualify for Medicaid.

Either way, the state would end up paying more.

"We thought that we did everything right — we are good parents, we have good jobs and we have good insurance," Kate said. "I guess that's not enough."

Long-term, "We feel the politicians should be forcing private insurers to cover doctor-ordered home care," Kate said.

Short-term, they want the 550 medically fragile children statewide who receive home nursing services to be exempt from future state reimbursement cuts.

"If children like Leo are unable to receive home nursing care due to reimbursement cuts, costs for these children will rise as more of them end up in hospitals where care is six times more expensive," Kate said.

A spokeswoman for Gov. Bruce Rauner did not respond to a Pantagraph request for comment.

Terry and Kate Trost, both 34, have been married and living in Heyworth for 11 years. Samantha turns 4 on Tuesday.

Even before Leo's birth on Nov. 11, 2013, at Children's Hospital of Illinois at OSF Saint Francis Medical Center, Peoria, his parents knew he had medical problems. "But we didn't know the extent," Kate said.

His esophagus was not connected to this stomach but to his lung instead, so that was corrected surgically. He also had scoliosis (sideways curvature of the spine).

Testing at five weeks of age prompted a diagnosis of PTCD.

"He has a malformed cerebellum and brain stem," Kate said. "Because that's the information highway to the rest of his body, that has caused cranial nerve issues including left side facial palsy and hearing and vision loss."

"It was devastating," she said. "Then the next day, we were ready to take on the challenge. It became our new normal."

Leo is deaf in his left ear and has profound hearing loss in his right ear, where he wears a hearing aid.

He can see but can't move his eyes side to side. "We don't know whether his brain is processing what his eyes are taking in," Kate said.

He needs the G-tube because when food is put in to his mouth, his brain doesn't tell him to swallow it.

He has low muscle tone that limits his breathing, little head control and no trunk strength, so he can't sit up without assistance. He can move his arms and legs but not purposefully, so he can't yet crawl or reach for things.

The first six months of his life were at Children's Hospital. Because he needs 24/7 care, he could not be discharged until his parents were trained to care for him and until Leo was approved to receive home nursing care.

Leo has a nurse through Accurate 8:30 a.m. to 4:30 p.m. Monday through Friday and 11 p.m. to 8 a.m. seven days a week. He also receives physical and swallowing therapy every other week and vision, hearing and occupational therapy weekly.

When the state made the 16.75 percent across-the-board cut to Medicaid reimbursement rates, some nurses who provide home care left for hospital jobs where pay is higher. Some agencies are getting out of the business of providing a higher level of nursing care — such as that required of Leo — because of the reimbursement problem, said Accurate CEO Amy Nelson.

"We have other lines of business in other states so we decided to ride it out," Nelson said. "But we had to pass that decrease on to the staff. There were some nurses who left and took jobs at hospitals. Leo's nurses stayed."

"I was not going to leave," Jen said.

"We were really fortunate that everyone stuck with us," Kate said. "We were one of the lucky ones. I know of six families who lost nursing care so their children had to be hospitalized at Children's Hospital."

"We're OK for right now but if there's no state budget by March, will nursing services be cut completely?" Trost asked.

"If the state could get a budget together, we could withstand a small cut," Nelson said. "Without a budget, we fear a larger cut later. It's the lawmakers' job to agree on a budget."

While Kate and Terry don't think Leo will ever be able to live on his own, they want to continue to care for him at home so he can get the therapy he needs and be as independent as possible. The more independent he is, the less dependent he will be on the state.

"These cuts might save money in the short term but cost more in the long run," Kate said.

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Follow Paul Swiech on Twitter: @pg_swiech


Health Reporter

Health reporter for Lee Enterprises Central Illinois.

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