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A Day Without Pain is the Best Day at Canuck Place

May 31, 2018

The children who receive care at Canuck Place Children’s Hospice have complex medical needs. Many have overlapping conditions, and minor bugs or typical childhood ailments can have unpredictable repercussions to their health.

When this happens, simply getting back to a stable, pain-free baseline is a Best Day Ever.

The Letcher family from Victoria, BC saw this first-hand when eight-year-old Heston, who is diagnosed with Sanfilippo Syndrome, had his tonsils removed.

After an uneventful surgery, complications emerged during his recovery that resulted in two weeks spent extubated in a hospital

The long sedation and drug schedule was complicated by Heston’s condition, which effects how his body metabolizes drugs. He was in constant pain and struggled to breathe.

“Our boy who had always been extremely easy going and laid back, even in the medical setting, seemed anxious,” says mom, Kerena. “He was in constant agony and pain, his body completely tense.”

Heston’s parents, Kerena and Jordan, grew frustrated and exhausted, re-explaining Heston’s rare condition to new doctors and nurses. One of them was needed at the hospital at all times, a hard juggling act over the Christmas season with four other children at home.

Finally, Heston was allowed to go home, but the work continued. He required 24-hour monitoring, and a strict schedule of medications administered every two hours, but Heston still wasn’t recovering like they hoped. He was unable to sit up in a wheelchair for longer than 30 minutes, making a ferry ride seem out of the question. The family needed help. They reached out to their Canuck Place team in desperation.

Canuck Place helped the family organize a non-emergency ambulance to bring them to Vancouver from the island.

“I will never forget the feeling driving into Canuck Place in the back of the ambulance,” says Kerena. “I remember walking onto the nursing floor, alongside Heston on the stretcher, welcomed and literally embraced by faces I not only recognized, but knew cared deeply for my boy.”

The Canuck Place team not only knew all about Heston’s condition, they knew Heston – his baselines, his personality, and what recovery would truly look like for him.

“We had never been inside those walls for anything but medical respite care,” explains Kerena. “And here we were in desperate need of pain and symptom management, which felt more like we were drowning and Canuck Place was handing us a life ring.  We were desperate and they were able to help.”

Finally, while Heston was attended to on the clinical floor, Kerena could take a break.

“One often does not know the weight of a burden they are carrying until it is lifted,” she says. “I will never forget the feeling of going into that room, my body almost shaking as I was allowed to finally begin to release the responsibility of Heston’s care.”

For the next two weeks, the medical staff at Canuck Place used their expertise to help Heston. They were familiar with Heston’s complications, his complexities, and adjusted feeds and medications appropriately. They helped organize x-rays, appointments with specialists, and even wheelchair modifications.

Slowly but surely, Heston began to look and act like himself again.

“He started to finally relax and seemed to enjoy holding peoples’ hands, so nurses and volunteers took turns sitting at his side, watching his favorite shows, holding his hand for comfort,” Kerena says. “He was surrounded by love – the recipe he needed for healing.”

“We left Canuck Place with a boy who was no longer in constant pain, which filled us with hope.  Pain for Heston has always been our greatest fear with his diagnosis.  He is the sweetest, most gentle and patient soul, and seeing him in pain was heartbreaking.”

Heston continued his recovery at home, aided by periodic check-ins at Canuck Place and support from the 24-hour nursing care line that is available to families across the province.

Now Heston is off all of his medications, back in his second grade classroom, and pain-free.

For Kerena and Heston, a Day without Pain is their Best Day Ever.

“I would like to thank those who have donated towards pain and symptom management at Canuck Place,” says Kerena. “Your support allows Canuck Place to offer life rings to families like ours who feel like we are drowning with nowhere to turn.”

You can help support kids like Heston at Canuck Place. Donate now 

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