Parents at centre of online training to bring Zoey Faith home
By Louise Kinross
Home.
It’s Thunder Bay, and it’s where Amanda Mintenko has always wanted to care for her 15-month-old daughter Zoey Faith—along with brother Liam, 2, and Dad Mathew.
But Zoey Faith was born with spina bifida, paralysis of her vocal chords and apnea, so she requires a breathing tube attached to a surgical opening in her neck to keep her airway open. “When she gets anxious her vocal chords close, so she would suffocate,” Amanda explains.
“At first we were told Thunder Bay wouldn’t accept Zoey as a patient and we’d have to move to Toronto because our local hospital had never cared for a baby who used a ventilator. I said no and wrote advocacy letters to our MP, lawyers, the child advocate and did anything possible to ensure that we got the proper resources at home. I fought for this and I want to make other parents aware, so that another family like ours isn't told they have to move.”
The transition home for Zoey Faith included a seven-month stay at SickKids and a four-month stay at Holland Bloorview, where videoconferencing was used to train nurses and respiratory therapists in Thunder Bay.
Using Ontario Telemedicine Network’s videoconferencing, Zoey Faith’s parents and the team at Holland Bloorview trained staff in Thunder Bay on the baby's tracheotomy care and how to provide her daily physiotherapy.
“Having the family show Zoey Faith's care right at the bedside helped the Thunder Bay team visualize what they would need to do,” says Maryanne Fellin, a clinical resource leader at Holland Bloorview. “It also allowed the Thunder Bay team to get to know the family, see how Zoey Faith would react in a real setting and then have a discussion during the videoconference.”
Amanda says she and her husband Mathew learned how to care for their daughter's tracheotomy, ventilator and stomach-feeding tube quickly, “Because we were so determined to come home. I had a two-year-old at home with his grandmother and I hadn’t seen him for 11 months.”
Amanda says the best part of being at Holland Bloorview was a month of “care by parent” where Amanda and Mathew did all of Zoey Faith’s care on their own, only calling a nurse if there was a problem.
“It was fantastic. We knew what we had to do. We had our privacy and it was nice knowing there was someone there to assist when we needed help. At home, we do the work all day, so we have to be able to tell when anything is wrong.”
In addition to using videoconferencing to train health professionals in Thunder Bay, the technology allowed staff there to participate in monthly family team meetings at Holland Bloorview. “Thunder Bay had homework to do and attending the family team meetings meant we could assess how much progress they had made,” Amanda says.
Amanda and Mathew eventually went home first to get ready for Zoey.
The one-year-old then flew to Thunder Bay with a Holland Bloorview nurse and respiratory therapist. “She loves to fly and it went very smoothly,” Amanda says. “I was comfortable knowing it was staff we knew who were coming with her. I felt she was safe with them.”
Amanda says she loves having her family together at home. “I’ve had a chance to start putting the kids into a routine and going for play dates and we also love having our privacy.”
Amanda says Zoey Faith is a happy, outgoing, playful baby who loves life. The family has seven hours of nursing-care every night so that the parents can sleep. The rest of the time Amanda is the primary caregiver. “I love it. She doesn’t require too much because she’s a very content, happy baby.”
Amanda says she was able to demonstrate Zoey Faith’s care hands-on to local staff in Thunder Bay when the family returned. But she likes knowing that Holland Bloorview is just a call away. “If I have a question I can’t answer I’ll call and speak to a respiratory therapist and they’ll share their insights.”
