By Thomas Goldsmith
Many sudden trips to emergency departments, long stays in myriad hospitals, and countless interactions with health-care and government professionals have marked the past four and a half years for the Irby family of Burlington.
Their goal was continuing rehabilitative treatment for son Zack, 27, who emerged from a January 2013 car wreck with traumatic brain injury. Parents Jeannie and Rick Irby have met with a mixture of helpful professionalism, red tape and seemingly contradictory regulations with all the stamina they can muster.
Zack retains the ability to talk and joke, follows pro and college sports and enjoys ‘90s pop music like “MMMBop” by Hanson.
He’s a paraplegic who uses a wheelchair to get around but needs help with bathing, grooming, meds and eating.
But Mom Jeannie Irby said she knows, “Zack would be working on a walker, if he had just been rehabbed without letting his regressions happen.”[pullquote_right]Click here for a detailed account of the Irbys’ journey[/pullquote_right]An outline of Zack’s treatment history makes plain the ordeal a family can face in the wake of a severe brain injury.
Jan. 28, 2013: After Zack’s accident, he is taken by helicopter, in a coma, to Wake Forest Baptist Hospital, where he stays for 11 or 12 weeks, receiving treatment for injuries to his brain, a fractured left pelvis and other results of the accident.
While there, Zack develops pneumonia, then Clostridium difficile, a bug that causes diarrhea and more serious intestinal problems. He maintains a fever of 104.5 for two days before doctors treat the infection by flushing his colon every two hours with zygomycin, an antibiotic.
Late May-early June 2013: Zack is discharged to Carolinas Medical Center in Charlotte, where he receives intensive rehabilitation for 59 days, the amount covered by insurance. “He was making phenomenal progress,” Jeannie said. “By the time he left, he was sitting up straight, he was able to eat and drink thin liquids. He was standing in a standing frame for more than an hour. Then they sent him home with in-home therapy.”
June-July 2013: After going through evaluations, Zack starts treatment at Alamance Regional Hospital, where the family is told that he will only receive therapy in his wheelchair, a condition they turn down. During a rare family trip, to Myrtle Beach, Zach has to be admitted to an ICU at Grand Strand Medical Center. “He had a very severe respiratory pneumonia and shower of pulmonary embolisms due to being so sedentary and not receiving therapy,” Jeannie said. Readmitted to Wake Forest Baptist, Zack is in worse shape than he was immediately after his accident, doctors tell them.
August 2013: The family is elated when representatives of the Shepherd Center in Atlanta say Zack will be admitted to the private, not-for-profit hospital, which specializes in treatment, research and rehabilitation for people with brain and spinal cord injuries. Their hopes are soon crushed when the decision is reversed because Zack’s injury is not a new one.
September 2013: Zack is admitted to WakeMed in Raleigh, where, after an initial attempt to send him home, Blue Cross and Blue Shield of North Carolina agrees to pay for the hospital to treat both his medical problems and to provide rehab. Jeannie stays with a high school friend in Raleigh so she can be at her son’s side.
“They fought for him week after week. They had Zack up initiating walking. He was able to vocalize. His swallow was getting stronger,” Jeannie said. “Not only was the team at WakeMed motivated, but Zack was motivated.”
Dec. 2, 2013: After allowing three extra weeks of rehab, the insurance company declines to pay for more therapy and WakeMed discharges Zack, sending him home, 10 months after his initial injury.
“The first year ended up costing Blue Cross Blue Shield $4 million,” Rick Irby said. “If they had just rehabbed him, it probably would have cost less than a million.”
Zack is again accepted at the Shepherd Center, but in an outpatient treatment program. Jeannie and later Rick move to Atlanta and live in an apartment provided by the center. “We started doing outpatient therapy at the Shepherd Center, but they were not prepared, nor were they equipped, for someone at his level of care,” Jeannie said.
January 2014: The Irbys bring Zack home. They are out of money and ideas.
Zack continues to have medical problems and is admitted at Memorial Hospital at UNC-Chapel Hill, but does not receive rehab. He spends two weeks back at Wake Forest, but is sent home, to go through months of periodic hospitalizations for medical problems.
September 2014: After Zack has another stint at Alamance Regional Hospital, an exhausted Jeannie refuses to take him back home: “He stayed at Alamance Regional for probably about a month. They couldn’t find a nursing home, they couldn’t find any place to take him. He was having outbursts; he was also getting very frustrated.”
It’s around this time that Jeannie learns about Money Follows the Person, a federal program that allows patients to return home and receive services through a Medicaid waiver.
October 2014: Zack enters an Alamance County nursing home, but receives poor treatment, including being left in his own feces and urine. Meanwhile, the family remodels a former garage to suit Zack’s needs. A $13,000 ceiling lift-system to transport Zack to his bathroom with roll-in shower gets funded through state traumatic brain injury funds, but the family bears the rest of the $100,000 cost themselves.
April 2015: With the house revamped, Zack comes home. He is able to receive 50 hours a week of assistance from an in-home aide through a North Carolina Medicaid waiver program called Community Alternatives Program for Disabled Adults. Under the program, he receives 30 visits a year for rehab, or fewer than one per week.
Jeannie, Rick and daughter Meghan spend a lot of time with Zack. Older daughter Julie Anne spent many hours helping care for Zack, but she’s moved out.
Zack is present in conversations, though sometimes blurting out inappropriate language. The stint in a nursing home brought about more regression, Jeannie said.
“He was absolutely crazy by the time he came home, he was absolutely insane,” she said, while maintaining that Zack’s intellect and real self live on inside him.
“He’s locked in a body,” she said.[box style=”2″]This story was made possible by a grant from the Winston-Salem Foundation to examine issues in rural health in North Carolina. [/box]