Moving Forward Towards Surgery

This morning I made the follow –up call to the pediatric nurse and was definitely expecting to hear a surgery date. I was disappointed to find out that we are given another timeline. William’s surgery is considered priority three, meaning it needs to be completed in the next three months, and we will be given two weeks’ notice before we need to be in Edmonton. The government doesn’t cover travel expenses so we will need to cover this ourselves but there is funding we can apply for through different organizations. I cannot believe that the government does not cover this when the surgery can’t be done in Saskatchewan. Travel is not optional. No family should have to worry about covering travel expenses, loss of pay, etc. while their child is having open heart surgery. Congenital heart defects are the number one birth defect in the world. Each year approximately 140 children are diagnosed in Saskatchewan alone and approximately 70 need to go out of province for care.
They mailed a package to us with all the pre-surgery information and Regan and I had a chance to look through it at lunch today. It’s a lot of information and overwhelming to read, but definitely helpful. It covers everything from what to pack, where to find support groups, where to apply for funding, what to expect, how to prepare, checklists, maps of hospital etc.
William will need to be in Edmonton 2 days prior to surgery and will have a full day of bloodwork, ECG, Eco-Cardiogram etc. the day prior to the surgery. I know once I have a chance to process it all I will be able to cope with all the information and Regan and I will be able to put as much in place as we can without knowing the date. It’s the unknown that’s really weighing on me. I know every time the phone rings after Christmas I will be anxious to know if it is The Stollery in Edmonton calling.
I feel so overwhelmed right now, and my heart physically hurts knowing in more detail what William will have to go through. I understand why they mail the package to you after the MRI now. They don’t want you to feel more overwhelmed than you need to and they really do support you and help you deal with everything one step at a time.

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Mexico and William’s 3rd Birthday

We booked a holiday to Mexico to be able to get away with the kids from Dec. 12th-19th. We felt that we all needed this trip and break from everything prior to his surgery. Regan and I knew that while we were away William’s Cardiologist would present William’s MRI results to Edmonton and would conference with Edmonton in regards to his surgery. The ball would be moving forward and being away from it all would help us to feel like everything was normal for that period of time with no worries, planning and thinking. We definitely had a great holiday with some great friends. We took each day as it came and had so much fun! William loved the beach and swimming in the pools, something he won’t be able to do for 6-8 weeks after his surgery. We celebrated William’s 3rd birthday in Mexico and had a great day at the Pirate Ship Waterpark, pool and out for supper at the Italian Restaurant Mama Mia. William then played musical chairs during the pre-show and did really well, it was cute to watch him just casually sit down when the music stopped while all the others kids were rushing and running to find a chair. This holiday was definitely something I will never forget and was full of so many great memories.

Sunday we had a few family and friends over to celebrate William’s birthday at home. I found it hard to focus that day as I knew that Monday morning we were to call about William’s surgery and was feeling anxious about it. At least when you are busy and with great friends and family the time seems to pass quicker. William had alot of fun and really enjoyed his John Deere themed cake!

After MRI

I have wanted to write a post for awhile to update everyone but honestly have just been struggling with the reality that things are moving forward to surgery and feel like they are moving fast. After William’s MRI we received a call from William’s pediatric cardiologist on December 9th to discuss the results of his MRI. William’s MRI showed no other issues with his heart that we were not aware of. This was really good to hear and I definitely felt a sense of relief. She then went on to discuss when surgery would be and when would work best for us. William’s condition needs open heart surgery or it can become lift threatening with no solution but is not considered urgent. It was not even a question in our minds about waiting for her to present William’s case to Edmonton even though we knew that when she did we could receive the call with a surgery date at any point and need to be there in two weeks from that call. I don’t feel there is ever a good time to have to go through this and if I was given more time to think about it I probably could think of a dozen reasons that any month was not a good month. January-Carly’s Birthday, Busy month work, February- Heart Month etc. We gave his cardiologist the green light to send his MRI discs to Edmonton and move forward.

All done for today…

William woke up slowly from the anesthetic and wasn’t upset at all. We waited with him an hour to ensure his vitals were ok and that he could keep fluids down without vomiting it back up. William got to have a yellow Popsicle and as many of you know he loves yellow. He wore his yellow runners to bed for a couple weeks when he first got them. He also wanted yellow glasses, maybe for his next pair. The nurse told us to get him to slowly drink a little bit more and eat a little bit  at a time. I can’t seem to stop him from wanting to eat. He has already had a glass of water, juice, two pieces of toast and an apple. He said there is still room in his tummy for pizza and mixed vegetables so we will definitely do that. He has been doing great and keeping everything down. Still a little wobbly. We will just have a relaxing rest of the day.

We will hear from paediatric cardiology within a week.

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Update

William just got out of his MRI and is still sleeping. The nurse said that he did really well only that little cry when we left. She then asked him if he wanted to put a magical mask on and go to the moon and see the stars and he said “ok” and went to sleep. We will get to see him soon! ❤️

MRI

William is currently in his MRI. It was so hard to leave him when he wasn’t asleep yet but we know he’s in good hands. He did so good with not eating or drinking anything. When I told him he could have whatever he wanted when he was done he said he wants pizza and mixed vegetables.  Funny because he doesn’t even have cheese on his pizza. I’m thinking we will take him to Famousa because he gets to play with dough while they make his pizza. It’s all so real now. I know we will soon have a surgery date and then we will be preparing to go to Edmonton for that. I’m looking forward to December 12th when we head to the Mayan for a week with our kids and friends. The kids don’t know yet as its a surprise and I can’t wait to see their faces. We were trying to work on William’s volume yesterday on the way into Saskatoon but we didn’t have much luck. He likes to talk loud!! I thought we could prep him so he wasn’t so loud on the plane, thank goodness he is cute. This trip will be so nice for us to just get away and have fun with the kids. He should be out of his MRI at 9:30.

Today is also my two year anniversary working for the Heart and Stroke Foundation. William is the reason I took this position and the Heart and Stroke Foundation continues to fund research to help children like William as well as many other types of research. I feel grateful to be able to work for them as my connection is so strong.

We are so thankful to all our family, friends and my co-workers for all their love and support! Means a lot to us!