On September 23rd, 2019 my six year old son, Kane, underwent his second open heart surgery at the Stollery Children’s Hospital in Edmonton, Alberta.
In the months leading up to Kane’s surgery, I kept struggling with two challenging thoughts… I was really concerned with how different this surgery would be than Kane’s first heart surgery when he was one. I was having trouble with the idea that I would not be handing over a baby, but a six year old boy who is infinitely more aware of what is going on around him and is able to clearly communicate his concerns, which are needles! My other recurring concern was with my younger son Maverick. Mav wasn’t around yet when Kane had his first surgery. And even though I am a grade one teacher who also has lots of hospital experience, I wasn’t sure how much information to share with him about his brother.
But thankfully we had our Child Life specialist, Judy!
Here are just some of the ways our Child Life specialist supported us…
Prior to surgery, Judy spent time with me on the phone. She answering my questions about how and when to approach the topic of surgery with both boys. We made a plan about what things would look like when we arrived back in town (backstory: until recently we lived in Edmonton, but now we are a four hour drive away in Canmore, Alberta). Judy sent me articles and a few other online resources for me to read. And she also suggested some picture books to read together with the boys.
Once we arrived in Edmonton, Judy met with both Kane and Mav the day before Kane’s pre-admission clinic. She used medical play to introduce the boys to things they might see during Kane’s upcoming hospital stay. She brought a medical play doll for each boy and a variety of “real” medical equipment, everything from medical gloves and masks to IV lines and bandages. Judy encouraged them to try out the different tools, showed some of the more common procedures and answered all their questions. Using an iPad Judy showed them a couple of photographs of the hospital room, some of the bigger equipment they would see in the rooms, and asked if they wanted to see what a kid looked like (a few days) after heart surgery. I love that she offered them choices and I appreciated how honest she was with the boys. She didn’t hide the fact that some things would hurt, but rather taught strategies for how to cope with pain and scared feelings. I definitely picked up a new strategy of two as well.
The following day at Kane’s pre-admission clinic, Judy was back again to spend more time with Kane and go a little more in-depth. They inserted an IV line into his doll and spent more time exploring what would be happening for Kane. Needles are the thing that Kane was most concerned about so Judy talked to him about how the staff would use numbing cream before his blood test. When he did have his blood test, Kane was surprised that the lab tech had put in the needle. He actually said “Oh that didn’t even hurt!”
I’m going to be honest…the day of surgery is a little blurry for me right now and I’m not entirely sure if we saw Child Life, but my guess is yes. That was hard to write. I pride myself on knowing all the details, but I am definitely still working through what has happened. That’s one of the reasons that I tell our story. I photograph our family’s life. I write about it and I talk about it because it helps me process what has happened.
But back to all the amazing things about Child Life specialists! Oh, and I should take a moment to mention how to find out if your hospital offers these kind of services. The first place I would start is by asking to speak to the social worker for your unit or department. If there is no social worker I would put the question out there to the other medical staff we are regularly in contact with. I have also found it useful to be in Facebook groups for parents of children at our hospital. It’s been a great space to ask questions like that.
In the days following surgery, Judy popped in regularly to see how Kane (and his parents) were doing. She brought a visual coping card for Kane to use related to pain and as he was feeling a better she brought a remote control car and some other activities for him to do. Throughout our stay, Judy continued to support me in determining when and if it was appropriate to bring Maverick to see Kane in the Pediatric Cardiac Intensive Care Unit (PCICU). She suggested we start out by offering to send a picture of Kane to Maverick, then a video and leave the choice up to him. Long story short…the boys absolutely wanted to see each other and we brought Maverick in a few times, where they immediately started one-upping each other on what they had gotten to do or what they had been given over the last few days!
Child Life provided an opportunity for our kids to explore the realities of hospital life and ask questions in a safe and developmentally appropriate space. We are so grateful for this learning opportunity for our boys. But, honestly, both my husband and I learned a lot as well.
If you are interested in learning more about Kane and his medical journey
check out Our Healthcare Story posts here.