Sitting at the table scrolling through my phone to find a password I needed I saw the numerous notes labelled William. As time passes it heals and you begin to move past the difficult times although you will never forget when your child has open heart surgery.
William is doing so well now and has really grown into his own little person who is full of energy and life. He is still slimmer for his age but he can eat more than I can at some meals. Sometimes having two eggs, toast and fruit for breakfast. He has always articulated himself in a way that blows me away and reading these notes tonight is a reminder of that and also of the journey we are on.
February 11th – 2016 Surgery Day
I still remember going with William into the surgery room while he sang O Canada and than when they put the needle in he screamed until the anesthetic kicked in. I than had to leave him and wait. I found this note from my phone:
When William came out of surgery into PICU he was awake which I was not expecting. The nurses asked for us to come in as he was upset. When we went in and they were just trying to get him settled, take his vitals, do ECG and chest x-ray. It was really hard to walk in and see him so upset and then so much happening. I actually had to leave the room because I’m not good with blood and seeing the drainage tubes as well as everything else made me dizzy. I completely broke down in the hallway. I had a nurse check in on me. William had a really rough night the first night because he couldn’t drink anything until 8pm and definitely no food. This is because he was on a lung bypass machine and drinking water and having it go down too fast at the start could cause pneumonia. He just kept saying you guys aren’t listening I want water up to the top of the lid I’m thirsty. He was also saying he was hungry and when we said no food til tomorrow he kept saying you guys are trying to starve me I’m going to starve. This went on until after midnight. I left at around 1:30 I just couldn’t handle it anymore. As a mother you never want to see your child upset for that long but also to not be able to give them what they ask for after a major surgery. I walked back to the Hotel in the sleet snow and actually went the wrong way a few times. My heart broke to leave him like that but I just couldn’t do it anymore. I hit a wall and was breaking down physically, mentally and emotionally. I woke up at 4:30am and went back to the hospital to see William sleeping peacefully.
February 26th -2016
William had his open heart surgery only a few weeks prior and he woke up crying from his nap. He was screaming my arm really hurts. I asked him where it hurt. He said, “It’s the needles, take the needles out.” I went to hold him and he cried. He said, ” Mom you can’t hold me like that they took a lot of blood out of my arm when they fixed my heart. I’m still healing.”
The days after recovery you are emotional and it’s hard to see your child struggle with the simple things they could so easily do before but than when you have kids they find a way to make you smile. On that same day I made the below note.
William was holding a mirror and he grabbed a wipe to clean it. I told him to not use a wipe to clean glass and that I could get him some cleaner. He said, “I already spit on it mom.” I said, “I don’t know where you get that from.” William than said, “I get it from my mouth.” I burst out laughing! His sense of humor makes me smile on a daily basis.
William’s medical journey currently requires only yearly check-ups but not all heart heroes need only one surgery. I have had the pleasure to meet so many amazing heart families, nurses, doctors and people over the last year and am dedicated to helping raise the funds needed to support these families and other families throughout Saskatchewan with the Mending Little Hearts Fund of Saskatchewan.