When our daughter Payton was born my husband and I had never imagined long car rides to seek out urgent care for her. Driving the eight hundred kilometers from our town of Foleyet, Ontario all the way to CHEO in Ottawa is now routine to us. That long distance really feels like a metaphor for how far Payton has come from a fragile newborn. I’m sharing our family story so you can understand how your support to CHEO is so important and deeply appreciated. We never knew we would rely on people we will never meet but let me tell you how you are making a difference for our family.
Payton was born in the summer of 2017. Her big sister, Amélie, and a loving extended family were waiting for her. To our shock she arrived with a double aortic arch which is a rare heart malformation that narrows her airway making it hard for her to breathe. She was also born with DiGeorge syndrome caused by a partial deletion of chromosome 22 that will affect how she develops physically and mentally. When your child is born with medical complications that you have never heard of, let alone prepared for, you become a student taking in every bit of information that you can. I’ve learned so much that sometimes staff at CHEO will ask me if I’m a nurse. I always tell them no, not officially, but I am Payton’s nurse.
As I understand more and more about Payton’s condition it surprises me to see how my plans for my daughter have changed. Everything from her diet to her sleeping routine, to her long list of medications, has been carefully vetted by medical staff. She was four days old when I held her for the first time, and while I know beyond a shadow of a doubt that she is my child, CHEO staff care for her like family and are such an integral part of Payton’s care and her life’s path. It’s not what I wished for my little girl but despite everything, including the eight-hour drives, I wouldn’t go anywhere else.
Payton spent her first six months in hospital and the staff became part of our family. Going home was scary. Honestly, when your child’s breathing is a challenge, you are on high alert 24/7. At CHEO we had experts in many different clinics consulting on Payton’s care, and when we transitioned to home, we had CHEO’s Complex Airways Program to help us with the equipment and instructions necessary to take charge of the day-to-day needs of our beautiful little girl. Your generous donations help fund this program and I cannot imagine Payton’s life without it.
Complex is definitely the right word to describe making sure Payton is able to do all the things a busy four-year-old wants to do. By the time Payton has had her first meal, medicine and morning snuggles – that she now begins by switching off her own ventilator and crawling into bed with us – a lot of work has been done to prep and maintain her equipment. Each morning begins with cleaning the tracheostomy (trach) tube in the front of her neck that helps her breathe and is also used to suction the mucus that is constantly building up. Tubing and the suction canisters need cleaning as does the feeding pump and gastronomy (or G-tube) that delivers nourishment directly when Payton can’t take food by mouth. We try to keep Payton’s life as natural as possible but we are very aware that the equipment and staff training provided by donor funding is crucial to us. She’s an independent girl, always on the go, so we’re always chasing her. Sometimes she has trouble slowing down when she needs that extra breath but her determination doesn’t waver - she can shut down her own ventilator and humidifier and suction her own trach tube if fluids build up. Payton has shown us time and again that whatever the challenge, she’ll find a way around it. I know that is one thing all parents can understand, like the day I learned she knew how to open the front door because she was on her way to see her grandparents – luckily, they live next door!
Therapy is also a big part of Payton’s life. She has speech impairment and works with a CHEO speech pathologist but the slow progress can be aggravating for my headstrong girl. When the speech valve on her trach tube doesn’t get results, she pops it off. She is learning to use sign language but gets frustrated when misunderstood, just as she gets annoyed when her lungs don’t work well and she relies more than I’d like on the trach.
Like many families who have a child needing constant care my husband and I cannot both work outside of the home. Even when we have nursing and family support we have to be on the property. We are so grateful that CHEO’s care and services include our region, it means that donors like you extend your generosity to families far away like ours. It may seem like a great distance, but to us CHEO is part of our home and it’s where Payton will have every chance to thrive in her own way thanks to your generosity. Thank you for your past support and please consider, if you can, supporting CHEO again so that families like ours can continue to count on this life-changing care. From my family to yours, thank you.