By Cindy Soderstrom
It takes a special skill set to parent on a pediatric ward!
That’s something Lyle and Kyla Thomson understand. They’re a Swift Current family who have been staying at Calgary’s Ronald McDonald House since June 2014 while baby Isabella is being treated in Alberta Children’s Hospital.
Recent studies have asked hospitals and families how Ronald McDonald Houses impact the hospital experience. One finding has been that families in Ronald McDonald Houses are better positioned to respond to a hospital’s efforts to offer family-centred care. Having nearby accommodations allows them to build stronger collaborative relationships with the medical team.
The Thomsons – especially Kyla – can attest to that. They’re well versed with what it means to be a parent of a child who needs complex treatment or a lengthy hospital stay. Kyla has started documenting the experience by blogging and video-blogging.
Her accounts show just how much parents at Ronald McDonald Houses absorb and process from day to day. So we asked Kyla about her motivation behind the online ventures.
Hi Kyla. Your YouTube Channel – “Hospital Mom Hacks” – really gets to the heart of the kind of learning curve that parents face when their child is critically ill. But why don’t you start by sharing a bit about Bella’s story?
Bella had seven surgeries in her first year. And also countless tests and treatments. It wasn’t until she was 11 months old that the medical team started to understand she essentially had no immune system. And the 2% she did have wasn’t functioning.
It’s such a severe scenario that the only treatment option for her was a bone marrow transplant. Neither Lyle nor I were a match for her. We were astounded that they found a match for Bella so soon.
The transplant process began in January, but she’s still in isolation while they monitor how she’s responding to the transplant.
You’ve essentially had one month at home in Swift Current since she was born, right?
That’s right. We’ve been between hospital or another for all but one month.
Bella was born December 6, 2013 in Swift Current. Soon after, she was transferred to the hospital in Saskatoon and she was in there until June 17, 2014. Then she was transferred to Alberta Children’s Hospital in Calgary.
We did get to go home to Swift Current on September 8, but one month later, we were back in the Swift Current Hospital. That was October 15. And five days later, we were back in the hospital in Saskatoon and then on November 4, it was back to ACH for her – and me! She was in ACH until May 29. And now that she’s out of ACH, she’s staying with me in the House.
And even though Bella’s no longer admitted to ACH, her doctors at ACH are monitoring closely. What does that routine look like for you and for her?
Now that Bella is discharged, she and I are still at the Children’s Hospital for clinic visits, 2-3 times per week.
I need to do all of this on my own because Lyle has to be in Swift Current to work.
If we couldn’t stay at Ronald McDonald House, everything would be so much more difficult. My heart aches for the many families out there right now who can’t get in here because there isn’t room. The House is always full.
Ronald McDonald House is a God-send.
With Bella’s large medication schedule, all her supplies, her being a baby…it’s a huge job. I’m still finding it hard to make time for myself to eat.
Ronald McDonald House makes every part of this new chapter in our lives a million times easier. Given that Bella’s on protective isolation in our room at the House, I can still go downstairs to see other friends and family while she naps. Anywhere else I would see no one and that would be so difficult and lonesome.
How did the idea to start the blog and the YouTube channel come about?
I started blogging last December because of so many family and friends who needed to know how Bella was doing and progressing. The blog became a way to keep history, and was like a soothing journaling process at the same time.
The YouTube channel came about for a different reason.
I’ve been in Bella’s hospital room for thousands of hours. And my energy has been focused on helping Bella – which of course is my priority. But after Bella’s transplant, the hospital experience became one of keeping her in isolation. That’s very different from when you’re preparing for or recovering from surgery.
I started to feel like there was an opportunity somewhere in this experience to do more.
I wanted to do something that had a larger purpose, something that would help a lot of people.
You called your YouTube channel “Hospital Mom Hacks.” You had a very specific audience in mind for this channel!
I started to notice that the nurses would compliment me on how I did certain things. Like the fact that I prepared Bella’s sleepers for lines and tubes by cutting holes in them. Or that I had a way of bundling her so that her hands wouldn’t get in the way for procedures like ECHOs on her chest or ultrasounds on her abdomen or central line dressing changes.
Would you say you have other families in mind – families you don’t necessarily know –when you’re producing these videos?
I really think there’s a need for this kind of information, information specifically for the parent at their child’s bedside.
When the nurses took note of how I did things, it made me realize that I’m a good resource. There are parents out there, right now, today, who are where I was a year ago.
Lyle recently found our copy of ‘What to Expect: The First Year,’ which struck us as so funny! (“Lies, Everywhere, Lies!”) As much as that book is today’s go-to resource for new parents, it doesn’t have anything that would have prepared us for the year we’ve had!
What we’ve been through is so rare. But on the other hand, there are families out there who are going through something similar. I’d really like ‘Hospital Mom Hacks’ to connect with those families.
Thank you for sharing your story with us, Kyla.
Bella’s blog is found at bellasmustardseed.blogspot.ca.
Her YouTube channel is at Hospital Mom Hacks. Subscribe to be notified when Kyla uploads new videos!