“Frankly, it really wasn’t clear whether or not Joey was going to survive,” Chris said. “His lungs were just so damaged. He wasn’t able to gain any weight. Nobody was saying much more than ‘We’re going to do the best we can for him.’”
But within a couple of months at Franciscan, his condition gradually improved. He was gaining weight and working with respiratory therapists, making dramatic improvements in a short span.
“By the end of December 1997, we were feeling like Joey was telling us he was going to stick around for a while,” Chris said. In the three years Joey spent in the pulmonary rehabilitation unit at Franciscan, he kept getting stronger and stronger. He began to sit up on his own. He was smiling. He was talking and singing.
Dr. Jane O’Brien, Franciscan Children’s Chief Medical Officer, was Joey’s primary care doctor when he arrived on campus.
“Joey is a miracle,” Dr. O’Brien said. “Joey has defined, for some of us, what a miracle is because he has survived beyond amazing odds. He has thrived against amazing odds and he has developed into a happy child.”
The Rices, who live in Newton, knew that the time was coming that they might be able to take Joey home for the first time.
But Joey needed a state-of-the-art portable ventilator to go home, and back in 2000, no child in Massachusetts had ever done that. Joey had fought for his life for three years. Now it was time for Kathleen and Chris to fight for him.
This brand new ventilator came with a set of obstacles. It didn’t have a classification, a history or discharge, and billing code. A lot of political red tape had to be broken down in order to bring Joey home on this new machine. So the Rices initiated a letter campaign, got vocal and started contacting local newspapers.
“We had a right to be together as a family,” Kathleen said.
Public support grew for the Rices and they reached out to Senator John Kerry who became instrumental in pushing the necessary legalities through so that Joey could finally go home. As a result, Joey was the first child in Massachusetts to go home on a portable ventilator.
Joey was home, but his Franciscan journey was just getting started. He continued to see Dr. O’Brien and his therapists on a routine basis, and he attended the now defunct medical daycare unit on campus until it was time to go to kindergarten.
The Newton public school system opened its doors to Joey from kindergarten to sixth grade. He was able to attend school with his twin brother and other children from the neighborhood, allowing Joey’s social side to emerge and grow.
But after elementary school, it became clear that the Kennedy Day School at Franciscan Children’s was where Joey could thrive.
“He continued to be medically complicated and fragile, and had a lot of special needs,” Chris said. “The Newton school district was trying to accommodate Joey at the next level, but it made sense for Joey to be at Kennedy.”
When Joey was still living at Franciscan Children’s, Kathleen and Chris would take him on walks with an adaptive chair and an oxygen tank. They would often find themselves in the Kennedy Day School (KDS), which provides fully collaborative special education, therapeutic and health services to students with significant, complex needs.
Their walks were on the weekends, though, when school was not in session.
“It was hard as parents to imagine that that was what Joey’s future was going to be,” Chris said. “We were looking at an empty hallway and it was dark and a bunch of equipment – equipment that no parent wants their kid to need.”
“Joey was really tiny and really sick,” Kathleen added. “Chris and I would go down to Kennedy and it would scare me to see these hallways because there were chairs and equipment; things that I didn’t recognize and didn’t understand.”
But it didn’t take long for the Rices to see what a truly special place KDS would be for Joey and their family.
