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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