I had just finished writing my Ode to the Stollery blog post when we got confirmation of Kane’s heart surgery date.
Kane will be having his second open heart surgery on Monday, September 23rd.
We will be at the Stollery Children’s Hospital for pre-admission clinic on Friday the 21st. This is good news, because the waiting game is my least favourite game and now we know. It is good news, because Kane will get his ticker fixed. It is good news, because the Wolfe Pack will get to spend the weekend in Edmonton doing our favourite things and seeing our favourite people.
But you guys, it is also terrifying.
Our confirmed surgery date is also good news, because I had been hoping to avoid surgery until the fall, mostly and maybe selfishly, because I wanted Kane and Mav (and I) to enjoy the summer. The summer means freedom. The summer means imagination and bows and arrows and spending time with family. The summer means time at the lake (Priest and Cowichan) with no set schedule. And even though I
am was a grade 1 teacher, I knew I would rather have Kane miss school than miss summer.
We have so many changes coming up with our move to Canmore that I wanted the summer to be “normal”, free of medical interventions and the feelings and fears that come along with it. We are planning to be in Canmore on August 26th, so that we have a week to settle in to our rental townhouse before Harrison starts work, Kane starts grade 1 and Mav starts…wtf…what am I going to do with Mav?!? He is set to start preschool three mornings a week, but what about the rest of the time?! Sorry, tangent.
When we move to Canmore both boys will have new places, new people, and new routines. For me, these things are exciting and something I am looking forward to. The boys are also excited, but I am expecting that all these changes will also be overwhelming and there are going to be lots of big feelings to help manage. Throw in to that whole mix that we are living in a short term rental while we continue to look for a house. Plus, Indy, our golden retriever, will be staying with friends because the rentals we could find were not open to pets. And just as we are beginning to get settled we head back to Edmonton for surgery. At this point, I expect to spend about a week or a week and a half in Edmonton, assuming everything goes as planned. Assuming Kane doesn’t get sick in the weeks before surgery. Assuming Kane doesn’t get bumped by a higher priority surgery or a transplant (though I like to think that I would be understanding). Assuming his recovery is as fast as the first time around, when we were home in just four days. But all of these things are things that I don’t have any control over.
And you guys, that is also terrifying.
If I just think about surgery and I compartmentalize all the other things happening in our lives, this is where my thoughts are right now. In my head this heart surgery will be so much different than Kane’s first surgery when he was one. This time I will not be handing over a baby who doesn’t realize what is going on. This time I will be handing over Kane, with all of his positive experiences and thoughts about the Stollery Children’s Hospital and hoping he comes out still loving the Stollery. This time we have Maverick. This time I will be explaining, and to some degree sheltering, Mav from what is happening with his brother. This time I know so much more. The good, the bad and the ugly.
As always, I know that we are in the best possible place, with the most capable people. There have been numerous examples of family centred care being even more of a priority at the Stollery compared to just 5 years ago. Things like the surgery being scheduled around our scoliosis clinic appointment to accommodate travelling to Edmonton and offers from the Child Life team to support both Kane and Maverick. But as much as my rational side can identify all the positives, there are times when panic seeps in and I have to reframe what is happening. It absolutely helps me to write out my thoughts and I know taking photos and spending time together with Kane taking photos will be really important once we are there.
In the meantime, organizing our Canmore lives and connecting with my people are my priorities. Though I am on the look out for resources and strategies to make all of these changes easier on our family. I recently came across a blog by an Edmonton heart mom about Preparing a Child for a Sibling’s Heart Surgery which reinforced my plan for Maverick. One of those things was to have a Mav and mom date at the Stollery prior to surgery. We did it when we were home in July. Mav and I wandered around and talked about the different places Kane goes to for appointments, played in some of the play areas, and checked out the fish tank in the Family Room. Mav had a camera with him and we talked about what Mav might like to get for Kane at the Stollery Gift Store (because everyone who stays overnight or has a sibling stay overnight or has a kid stay overnight at the hospital deserves a new toy as far as I’m concerned!) Slight aside: the doctor kit that Kane was coveting at the gift store, the one we agreed he would get if he ever had to stay overnight at the hospital, the one he immediately reminded me of when we talked about the fact that he would have to stay overnight, is no longer there. Shit! So if you see an amazing doctor’s kit please let me know where it is because that is what I am going to obsess over for awhile!
The other resource that I was excited to come across was a video put out by the Stollery which can be found on the Alberta Health Services website called My Operation, which explains what families can expect when coming to the Stollery for a surgery. This 12 minute video is read in a storybook format and follows a boy named Cael through all the different steps related to coming to hospital for surgery, the pre-admission clinic, pre-op, post-op, heading to a unit and being discharged to go home. Kane and I will definitely spend some time watching and talking about it prior to his surgery. Maybe it will even help us create a shotlist for how we can tell the story together with our cameras!
And then as I was getting ready to post this blog I was looking for a link I wanted to add when I came across an AMAZING page posted on the Alberta Health Services website. It’s under the heading Stollery’s Congenital Heart Program and is titled Your Child’s Heart Surgery. I haven’t had a chance yet to go through it, but you can bet I will be spending some serious time nerding out. Thank you to the Stollery for getting this information online for families!