Parents and grandparents, pushing strollers, hauling backpacks and holding the hands of little ones, joined with dozens of nurses and other staff of the Pediatric Intensive Care Unit (PICU) for a one-of-a-kind reunion Sunday at Akron Children’s Hospital.It was the first-ever PICU reunion, a special day to reconnect for families and staff, far removed from the day-to-day traumas that brought them close together for days or months at a time.
“It’s awesome to be here today, to find joy and good things in life for all the kids here,” said Laura Fairfax, whose son, Jack, 4, spent 9 days in the PICU when he was 6 months old.
Laura was a nurse in the unit at the time, and she watched her co-workers take care of Jack (she’s now a perianesthesia nurse at Akron Children’s).
“It was very humbling as a nurse to be on the other side of the bed,” she said, as Jack fixed his attention on an Iron Man mask he’d gotten at the event. “It gives you a different perspective.”
Held in the Considine Professional Building, the reunion featured balloons, activities and a magic show.
Close to 200 people attended the reunion. Mindy Aleksiejczyk came from Steubenville. Her 3-year-old son, T.J. has been in the PICU about 7 times for pneumonia. On Sunday, Mindy volunteered at a table giving away handmade dolls, puzzles and books.
“This our family,” she said, motioning toward staff members. Thirty of the PICU staff came to the reunion.
Mindy is part of the PICU FACT group (Family Action Collaborative Team), a parent advisory and staff group that came up with the idea and planned the event.
“It’s a beautiful thing,” she said. “We can see the staff on happy terms, not under the stress of your child being critically ill, and say thank you.”
Melissa Baker, certified child life specialist in the PICU and an organizer of the reunion, was elated about the turnout and the joy she witnessed.
“It’s so nice to see these happy kids being kids, and families being families,” she said. “We don’t always get to see kids play and laugh, so this is a reward for the staff.”
PICU families, staff carry a trove of memories. Here are some of their stories.
Thankful for the love
Kim Rudawsky credits the PICU staff with saving her daughter Samantha’s life. Samantha had serious complications after heart surgery 8 days after birth in 2015. She was on life support and became a resident of the PICU until she was 6 months old.
Kim said the staff took care of Samantha as if she was their own. Kim would find nurses sitting and holding her daughter. She remembers one nurse holding Samantha at the window to watch fireworks at an Akron Rubber Ducks game.
“They showed her so much love and affection,” said Kim, whose family lives in Louisville in Stark County. “They didn’t have to – it wasn’t part of their job. They went way above and beyond. The nurses were the first people she smiled at.”
Kim is certain the PICU saved Samantha’s life.
The first child of Kim and her husband, Pat, Samantha had multiple heart defects detected in utero. After surgery, Samantha was flown to the University of Michigan Children’s Hospital in Ann Arbor for subsequent surgeries.
Because she needed a tracheotomy and breathing machine, Samantha wasn’t able to use her voice until age 2.
She has come a long way since then. On a recent weekday, Samantha played on a computer tablet after an appointment at Akron Children’s Hospital. Her brother, Deacon, 2, came along for the ride in a red wagon Kim pulled through the corridors.
Samantha started running this year. She can ride a bike, and she goes to a special preschool. Her feeding tube came out in the spring.
“It was the last piece of medical equipment installed in her,” Kim said. “It’s amazing she survived everything she went through.
“The staff of the PICU past and present still continue to play a huge part in her life. They are all her family.”
A special bond
PICU staff share a special bond with the patients and families they care for. They celebrate milestones together, like the first time a critically ill child moves from the bed to a chair; birthdays, holidays and goals in the care being met. They tend to the emotional needs of parents and siblings as well, and often think about patients and families long after their stays, which can last days, weeks and sometimes months.
“PICU staff form relationships with our patients and families,” said Heather Goostree, clinical coordinator of the PICU. “We often wonder how everyone is doing after leaving the PICU. Many families comment about wanting to visit with PICU staff to share how they doing.
“We see families at the worst time of their lives, and it’s such an honor to work with these patients and families.”
She and Melissa saw the reunion as an opportunity for PICU staff to reconnect with families, to see children who came through and thrived, and to pay tribute to those who didn’t.
The Santa PICsU Foundation, which provides gifts and support to the PICU and families, sponsored the event. Melissa, Heather and Social Workers Lori Dente and Angie Troyer put it together with help from other staff.
Melissa’s role in the PICU is family centered. She’s part of a support team that includes hospital social workers and Chaplaincy Services.
“We see some really hard things, and we see some amazing things,” said Melissa. “We celebrate our successes and honor the hard days.”
Melissa said an important part of her job is helping parents figure out how to parent in the PICU, while assisting patients and families coping with their experiences. The parenting role becomes redefined when others are taking care of your child.
“Parents watch and take it in,” Melissa said. “Where do you find your place? I encourage parents to take part in care, to be mom and dad.”
Part of family-centered care is also holding a moment of silence during the worst of times. Known as “The Pause”, the observance honors a patient’s life and a family’s love.
“We as caregivers honor the child’s life,” Heather said. “They’re not just a patient; they’re a person.”
The road to recovery
Healing can be a long and difficult journey for critically ill children – and their parents – after leaving the PICU.
When Beth Ransom of North Canton talks about the times her 9-year-old son, Lucas, fought for his life, the unexpected turns he took as an infant with severe medical problems, her emotions rise to the surface. Her experience had a profound effect on her and on her career.
Beth vividly recalls the day they were at Akron Children’s to see specialists when Lucas was about 1 month old. He was born with a cleft palate and had been in the PICU at another hospital. She almost called off the appointments at Akron Children’s that morning because Lucas was ill. It’s was fortunate that she didn’t. At the hospital, he became sicker. His color was bad and his pulse was weak. They ended up in the emergency department, where doctors discovered a life-threatening blood infection.
“They said they had to act fast. We didn’t have a lot of time,” Beth said.
Lucas stopped breathing in the elevator on the way to the PICU. They rushed him to the unit.
“It was like you see on TV. Everybody was in this room. They were pumping, doing CPR. It was like it was happening in slow-motion.”
Lucas spent the next 2 and a half months in the PICU. Beth and her husband, Brent, were told the infection could cause brain damage. They would have to wait and see. He needed a ventilator to help him breathe, a tracheotomy because of his cleft palate, and a feeding tube. His parents weren’t allowed to hold him for a long time.
Lucas progressively improved. He went home in the spring of 2010. A few days afterward, a follow-up visit at Akron Children’s revealed that pressure had built up in his head. Beth was told they would have to return the next day for surgery to drain fluid.
While he recovered from surgery, Lucas’ heart stopped for unknown reasons. Medical staff resuscitated him. Beth was hyperventilating. Someone handed her a paper bag and told her to breathe into it. The trauma of that moment gave her nightmares. She knew after that she wasn’t the same person.
Lucas was back in the PICU several times. Beth lost count of all his surgeries. But today Lucas is doing well. Going into fourth grade, he is intelligent and social. He loves to swim, play baseball and rides horses. On a recent afternoon, he showed off 3 harmonicas in different keys, blowing a few notes of Jingle Bells on one of them. “I play the harmonica with my friend. I’m still learning how to play,” he explained.
“He’s such a trooper,” Beth said. “He’s come so far. He’s a miracle. He learned to walk and talk. He can read and write. He has emotional intelligence.”
Beth is grateful for the PICU staff. She talked about how Social Worker Lori Dente helped them navigate medical insurance issues, government programs and home health care. She remembers the psychologist who urged her to take photos.
“I said I didn’t want to. I wanted to forget all this,” Beth recalled. She was glad she did because it reminds her of how far Lucas has come.
Beth had her own healing to do. She learned she was suffering from posttraumatic stress disorder (PTSD).
“I knew something was wrong with me, but I didn’t know I had PTSD,” she said.
Working through her difficulties, she realized she wanted to be a mental health counselor. She went to school to finish her graduate studies, received her degree in 2013 and became a licensed clinical counselor.
During her studies, she wrote a paper about significant rates of PTSD in parents like her.
Today she specializes in trauma, helping people with PTSD.
When Beth and her family appeared at the reunion, the outgoing Lucas happily approached familiar faces to say hello.
The good feelings on display Sunday were clear proof that the event was a big success. By the end of the afternoon, organizers were already talking about the next reunion.
Watch more about the event in this WKYC Channel 3 story.