The What If Monster
5am Saturday – 31 hours until Kane’s heart surgery
I can’t sleep. I think about if I’m getting sick. I think about my to do list. I think about whether I have connected with everyone I need to about the 6000 things that we have on the go right now. I think about whether I got enough Wolfe Pack Warriors shirts put aside for the people that spoke to me about them. I think about Mav adjusting. I think about Harrison and how he is managing. I think about Kane and have to stop myself from going too far down the rabbit-hole of all the what ifs. So right now I am battling the what ifs with more positive thoughts
What if: What if Kane has a hard time coping with the surgery preparations on Monday? The fasting? The IV? The waiting?
Re-frame: When we were at pre-admission clinic on Friday child life put an IV line into his medical play doll with him. The staff used numbing cream on two potential insertion spots prior to his blood test. Kane was surprised that the lab tech had put in the needle. He actually said “Oh that didn’t even hurt”
Gratitude: Thank you to the staff involved in pre-admission clinic. The way you honestly talked with Kane has been phenomenal. Thank you for letting him play with the equipment and ask his questions when he was ready.
What if: What if Kane’s surgery gets bumped on Monday? Until he is asleep in the operating room there is a possibility of getting bumped and starting this whole thing again.
Re-frame: This is not actually in my control. If the surgery does not happen on Monday then it was not meant to be on Monday. That’s the best I can do with that. It is still probably my number one worry.
Gratitude: Thank you to our cardiac team who have been doing their best to keep us informed of what is happening with the surgery. Plus, you guys, we live in a city, a province, a country with amazing healthcare services.
What if: What if having a photographer there is upsetting for Kane? I met an amazing woman named Raz, of Slice of Love Photography, at the Storytellers Photo Conference whose personal project is to follow a family during their child’s heart surgery. She is hoping to learn more of what her own parents would have been through during her heart surgery at the age of two.
Re-frame: Raz is a professional and a heart warrior herself. She will be able to read the situation and make the judgement call on when to be involved and when to step back.
Gratitude: Thank you Raz. I appreciate that you have taken time off work and flown yourself up here to support my family. I hope you get what you need from this project. And thank you to Maureen and Greg for offering their guest bedroom so we can keep costs down for Raz.
Which leads me to…
What if: What if Kane doesn’t want to take photos for our Together project?
Re-frame: He doesn’t have to. The Together project is a choice. I will have a couple of different cameras available for him. I will have them out and if he wants to take some pictures that’s up to him. When we were there on Friday he took a couple shots of me taking pictures of him and that was all he wanted that day. There are going to be times that I don’t want to take pictures too (though lets be honest…photography is my stress relief)
Gratitude: Thank you Kristine. Thank you for listening to me vent about my worries leading up to photographing our family in hospital. I recognize I don’t need to look objectively at the scene. I need to shoot from the perspective of mom, not the perspective of someone looking in on our life.
What if: What if Kane’s recovery is more complicated than the first time? After his first heart surgery when he was one, Kane was back home after just four days in hospital.
Re-frame: Kane is a warrior. He’s got this. He is resilient and definitely won’t sit still for long!
Gratitude: Thank you to his cardiologist, his surgeon, his intensivist and their teams. Thank you to the nurses who will be supporting Kane and our family in the days to come. We know that you are providing world class care and are there to monitor his recovery.
What if: What if Kane doesn’t connect with peers when he heads back to his new school in Canmore? In fairness this is totally a mom fear and has little to do with surgery.
Re-frame: Kane is funny and fun to be around. He will find his people.
Gratitude: Thank you to the teachers and staff both at his new school in Canmore and at his old school and daycare in Edmonton for going above and beyond in supporting him and making sure he knows he is cared for.
Wolfe Pack Warriors
Here it is…almost 5am on Tuesday – surgery was 15 hours ago
Some of the “what ifs” that kept me awake on Saturday have been resolved. Some are still keeping me awake.
What if: What if Kane has a hard time coping with the surgery preparations on Monday?
Reality: Kane was so positive about coming to the hospital. Monday morning before surgery he had no problem with not eating. He got dressed in his Wolfe Pack Warriors shirt, played doctor with his brother, Maverick, and did a little wrestling with his dad. We got some great photographs of our whole family wearing our Wolfe Pack shirts, even our golden retriever, Indy. We went to hospital with Kane’s entourage; mom, dad, Uncle Brendan and Raz. Maverick was really excited to have a sleepover with Nana Cheryl (I’m thinking because she promised him some iPad time) which made the goodbye part easier. The morning at the hospital went pretty smoothly. We DID NOT get bumped. The only rough patch was in the operating room when Kane felt the IV being started in his hand. He was not impressed. His team was amazing with story distractions. They tried one more time and then switched to the mask instead. The IV was what Kane was most worried about.
What if: What if having a photographer there is upsetting for Kane?
Reality: Kane is so used to cameras being around that he didn’t even notice. Raz got into Edmonton from California on Sunday afternoon. She spent the evening with us and bonded with Kane over their zippers. That is what we call his heart scar from his first surgery. Kane was asking her questions about surgery. Raz’s amazing response to one of his questions was “Well, it’s a zipper. Zippers can be opened and closed.” Raz was also an absolutely perfect distraction for me. Sunday afternoon instead of stressing about surgery I was talking about photography. I even slept through the night on Sunday! And having Raz around during surgery and into the evening with Kane made a big difference for me. She was with us from 7:30 in the morning until 10:00 at night, and she is coming back tomorrow before flying out. I know this project is important to her, but I also have no idea how I will even begin to repay her for what she has done for me. I have no words right now.
As for Kane taking pictures…he took a few. He was happy to have his camera. He even brought it in the operating room, but got distracted by all of the equipment and satisfying his curiosity with asking the team questions. Kane did what Kane needed. And that is the best possible outcome I could hope for as a mom.
What if: What if Kane’s recovery is more complicated than the first time?
Reality: Kane has words. When he was one there was not much communication. This time around we know how he is feeling. This is wonderful because he can tell us what he is feeling, what’s bugging him, where it hurts, when he wants water… Other times it is heartbreaking like when we first saw him and he looked at his chest and said “There are too many bandages.” Or when he starts to feel one of his chest tubes and needs more pain meds. When this happens he notices that it is harder to breathe and then is suddenly crying out and saying “I’m losing it! I’m losing it!” Kane is using a 1-5 coping scale to help tell staff how he is feeling. Each level shows a face and has a quick description. The 1 shows an obviously upset, crying face and underneath it says “I lost it. I need a break.” This has only happened twice, but we are working on getting Kane to recognize when he is beginning to notice those feelings in his chest so we don’t get to a 1. Most of the time he is relatively comfortable and everyone is doing their best to support him.
What if: What if Kane doesn’t connect with peers when he heads back to his new school in Canmore?
Reality: There are so many people that showed Kane just how much they love him. The outpouring of support for Kane and our family on his surgery day was overwhelming. This is what is currently making me lose my &#$&. I haven’t cried much, but there are tears pouring down my cheeks right now because it was so amazing. I can’t thank each and every one of you enough. Every time we saw a picture of a Wolfe Pack Warriors t-shirt or read a message to Kane or to our family it picked us up. I can’t tell you how much I needed that.
Thank you for being our Pack.
Thank you for reaching out.
Thank you for being there for us.
We still need you.
For more posts related to Kane and his medical journey check out Our Stollery Story.