Posted on Thu, Jun. 26, 2003
15-month-old finally released for first time after living in hospital
Home is truly sweet for Brady
Beacon Journal medical writer
In his 15 months of life, Brady Eikleberry has had only one home -- a hospital room at Akron Children's Hospital.
"He's never been anywhere but here,'' said his father, Rick. "He's never seen what a normal house looks like.''
Wednesday, though, he finally did.
Shortly after 10 a.m., Brady was discharged from Children's and wheeled out the front door on a stretcher, followed by more than a dozen nurses who were snapping pictures, shooting videotape and shedding tears as the pudgy-faced boy was loaded into a waiting ambulance for the ride to his parents' house in Harrison County.
"It's been a long time,'' Rick Eikleberry said. "Fifteen months is too long for anybody.''
Brady was born in March 2002 with two holes in his heart and a malformed esophagus and trachea. A series of eight operations -- totaling more than $1 million -- saved his life.
But it hasn't been Brady's health that has kept him in the hospital; it's been an insurance issue.
Doctors said in early January that Brady was ready to go home and should go home.
Caring for Brady at home, though, will cost between $13,000 and $18,000 a month, for medical equipment, doctor visits, and in-home nursing care.
Rick and Nikki Eikleberry -- an assistant manager at Wal-Mart and a teacher, respectively -- couldn't afford that cost without special Medicaid funding known as an Ohio Home Care Waiver.
But Brady was No. 3,126 on the list of those waiting for a waiver.
The Eikleberrys undertook an aggressive letter-writing campaign and turned to the media to pressure Medicaid to grant a waiver. As part of their plea, the parents pointed out that Medicaid was paying more to keep Brady in the hospital (about $80,000 a month) than if he were sent home (about $18,000 a month).
"We don't know who cut through the red tape, but someone at the state must have seen that it would cost them less money and be best for Brady and the family if he were home,'' Rick Eikleberry said. "We don't know who approved this and we really don't care.... We just want him home.''
In fact, nobody cut through any red tape, said Jon Allen, spokesman for the Ohio Department of Job and Family Services. And Medicaid was not spending more to keep Brady in the hospital than by sending him home.
"No preferential treatment was given to any person on the list,'' he said. "Somebody can't write a letter and expect to be put at the front of the list.''
Brady received his waiver because the other 3,125 patients in front of him had worked their way through the system.
"Even though his case was compelling,'' said Tom Hayes, director of Job and Family Services, "there were 3,000 other stories, 3,000 other children.''
And Hayes said the $80,000-a-month figure was inaccurate. Medicaid has not paid for any of Brady's hospital care, he said, outside of $75 a day in doctors' fees and some other miscellaneous expenses, such as radiology costs.
In other words, he said, taxpayer money was not wasted keeping Brady in the hospital when he could have been home.
Children's spokeswoman Laurie Schueler agreed that Medicaid has not paid Brady's $80,000-a-month bills. But Medicaid is supposed to, she said.
"During the six months it took for the waiver determination to be made,'' Schueler said, "we continued to take care of Brady, because we did not believe this child could be adequately cared for at home without support from health professionals. Akron Children's Hospital took the high road. We hope that the Ohio Department of Job and Family Services will also take the high road, and reimburse Children's for the care Brady needed in the intervening six months.''
Brady requires round-the-clock care. He needs to be fed through a tube every four hours. His mouth and throat need to be suctioned regularly -- an especially crucial job.
"If he spits up,'' his father said, "he can stop breathing.''
For 12 hours a day, seven days a week, the family will rely on the support of a visiting nurse. The rest of the time, Brady's care will be up to them, and eventually other family members and friends who will receive special training.
Caring for Brady won't be easy.
"For them to take on this, it's rare,'' said Lea Rockey, one of three registered nurses who led Brady's hospital care. "This is very intensive nursing care here. Most parents couldn't handle this at all.''
But Wednesday was the day the nurses -- as well as the family -- have been waiting for.
"We've been taking care of him for so long,'' said nurse Colette Benincasa. "It's like he's your own baby. We're happy for them, but we're going to miss him.''
As difficult as Brady's first 15 months have been, Rockey and Benincasa say that his future holds promise. It's possible that he could start being slowly weaned off a ventilator within a year.
"Hopefully,'' Rockey said, "by the time he's 5, all this will be in the past.''