Rare heart scares for PA father and son sparks #prayersforkeaton

When it came to physical milestones, Keaton always seemed a little behind other kids.

“He had a failure to really flourish. Like, he didn’t grow at the same rate as a lot of other kids. And just little wee things that you kind of notice when your kid is growing up, a little bit of lagging on one side of the body when he’s learning how to crawl and walk,” Dana said.

Keaton had an enlarged liver, which led doctors in Saskatchewan to believe he had liver disease for more than three years.

“We kind of always knew something was wrong with Keaton, but we didn’t know exactly what,” Dana said.

Later on his belly started to swell and in the summer of 2013, Keaton became very puffy. His body was accumulating fluid beneath the skin, which is called edema.

Tests in Prince Albert’s Victoria Hospital didn’t provide a diagnosis, which led the family to the Stollery Children’s Hospital in Edmonton.

That’s where, four years after Keaton was born, the picture became clearer.

Keaton had restrictive cardio myopathy with secondary pulmonary hypertension. People are born with this condition, and there is no cure for it.

He needed a new heart.

Dana’s voice caught as he explained all those years of symptoms were “virtually at the end of the day from heart failure.”

He acknowledges the condition is extremely rare in children and that’s what took so long to come to the diagnosis.

Life after diagnosis

The family spent more than three weeks in Edmonton with “nonstop” daily testing to ensure that Keaton’s body did require and would be able to support a new organ.

As the city with the only transplant facility for children in Western Canada, Edmonton became home for the family for long periods of time.

All the travel and expenses had consequences with the family.

While Keaton’s parents have been with him, their daughter has been in Prince Albert with her grandmother.

Staying in hotels took a toll on their banks accounts. On top of that, Janelle, Dana’s wife, had to leave her job.

“Hotel rooms, and food, and parking, and all of those things, it does add up. But you just got to do what you got to do,” Dana said.

Throughout the whole journey, Dana and Janelle were diligent with updating what Keaton was going through on his Facebook page. They started on Aug. 8 and have been going strong with status updates.

Community support helps family

The social media interactions haven’t been a one-way street. Outpourings of support on both the good days and the bad have been constant.

Tweets like “thoughts and prayers to you and your family and strength for tonight, #prayersforkeaton” are common from people in and around Prince Albert.

Gene’s Sports has been selling support bands for $5 that read “#prayersforkeaton” since August.

The money raised goes towards the family, and is only one of many efforts to help them out financially.

“We’ve had absolutely amazing support, not just from family and friends. Some people in cases that we’ve never even met. They had a fundraiser dance at the Art Hauser Centre. I think if I remember correctly it was about $35,000 or something like that that was raised,” Dana said.

The family has also received support from Telemiracle.

Another heart scare hits the Dirks family

In March, something caught the entire Dirks family by surprise. It started with what felt like a random bout of indigestion.

Dana went to a doctor and within a short time was on his way to the Royal University Hospital in Saskatoon with three clogged arteries.

Even with a quintuple bypass on the table, Dana and his family took it in stride.

“This whole thing of me having the surgery maybe helped us a bit because I had the surgery before him [Keaton]so he got to see me when I came out of surgery. He got to see the scars that I have on my chest, all the tubes coming out of me and everything when I came out of surgery. And it really helped him know what he was going to go through and he had kind of made some jokes about it to see which one of us was going to have a bigger scar when he got his new heart,” Dana said.

Things picked up even more after that surgery.

“I was only two weeks removed from surgery when we got the call that Keaton was going to get the transplant and we had to get him out and get him on the plane,” Dana said.

Keaton has slowly been recovering since his April 8 surgery. He is still in the Intensive Care Unit in Edmonton with little battles and successes along the way.

They recently moved into the Ronald McDonald House after being on the waiting list since August. Although Keaton is still in hospital and can’t move in yet, the family is happy to be staying there.

“It’s a fantastic place with great volunteers, a nice big room. When Keaton is well enough after the transplant that he can get out of here he’s quite excited to go to the Ronald McDonald House rather than have to sit in a hotel room,” Dana said.

The family will likely still be in the city for another two months for post-surgery tests.

The whole experience has made Keaton’s life quite a bit different. The four-year-old would have been enrolled in pre-kindergarten this year, but that wasn’t possible with all the travel and hospital stays.

The Ronald McDonald House will give a much-needed taste of those normal childhood experiences.

“He’s really looking forward to it … There’s lots of stuff to do there, kids, video games, and playgrounds,” Dana said.

claskowski@panow.com

On Twitter: @chelsealaskowsk

by Chelsea Laskowski

Rare heart scares for PA father and son sparks #prayersforkeaton

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