Doctors at the Stollery Children’s Hospital say the at-home ventilator program is allowing patients to go home sooner and more prepared for life after a tracheostomy: a procedure that inserts a tube into a person’s trachea.
“It’s freedom,” Dr. Jonathan Duff said. “They can start acting more like normal babies and start to have that normal life.”
The 2024 Corus Radiothon is looking to raise funds to supply the hospital with two more at-home ventilators to help patients practice on the equipment before they are sent home.
By using the at-home ventilator, patients are able to train sooner on the equipment leading to medical independence and shorter hospital stays.
“They have to be able to respond to emergencies,” Duff said. “What happens if the tracheostomy becomes blocked or falls out? They’re the ones that are going to have to deal with it.”
The ventilators can be complicated. Duff said staff who are working with families train for years before they are able to comfortably use them, but parents don’t have that kind of time.
“We have months, weeks to get these families up to speed to how they can handle these things,” he said. “To say that there’s a lot going on there would be an understatement.”
Every year, Stollery staff help nearly 50 new long-term tracheostomy patients and their families from across Alberta, the N.W.T and Nunavut, and it can be an overwhelming process.
“It was like this whole whirlwind,” mother Kimberly Stahl said. “The doctor came in one day and he was like, ‘I’ve got a tracheostomy in the back of my mind,’ and we’d never, ever heard this word.”
Stahl’s daughter, RosLynn, was diagnosed with a left-sided congenital diaphragmatic hernia when Kimberly was 18-weeks pregnant.
RosLynn received a tracheostomy when she was two-and-a-half months old. The family from central Alberta was immediately taken for training on the at-home vent.
“I get to take the ventilator wherever I go,” Stahl said. “It’s the heart of everything.”
Stahl said being able to practice with the team has made all the difference. The family has gone from not even being able to hold their baby girl, to going on adventures around Edmonton.
They have even taken RosLynn on overnight trips home to Tofield.
The now eight-month-old has been able to go on ventilation breaks for 90 minutes, three times a day, working her way to finally going home permanently.
Stollery tracheostomy educator Nicole Bonn helped the Stahls on their journey.
“You only get comfortable and confident if you practice with it and you practice with what you’re going to be using at home,” Bonn said.
“I would like to have the equipment be old news and be something they’re super used to muscle memory so that when they go home they can really focus about being home and helping their child.”
Before the at-home ventilation program, families wouldn’t be able to practice on the equipment they would be taking home until much later.
The Stollery Children’s Hospital Foundation is looking to raise $45,000 to purchase the two new at-home ventilators.
The two-day Corus Radiothon in support of the Stollery Children’s Hospital Foundation runs Thursday and Friday. To donate to the children’s hospital you can call 780-407-5437 or visit the Stollery Children’s Hospital’s website.
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