Today many families are sitting down to their thanksgiving dinners and I thought I’d share what I’m thankful for this year.
I began this month thinking I wouldn’t be seeing any of my family around the dinner table enjoying a roasted turkey dinner with all the fixings sharing laughs and enjoying the company of my family. My son was scheduled to head to the IWK for a sedated CT scan the week before Thanksgiving. A procedure some may call simple and easy. Except for Weston, it was anything but. It was a test that could end his life due to the anaesthetic the doctors needed to use.
Weston has Williams Syndrome. A rare genetic condition that for him effects his heart. Not many doctors have ever heard of Williams Syndrome because it’s so rare, making the unique needs of his medical care difficult. This test was going to tell us if he would undergo immediate open heart surgery. Unfortunately those who have Williams Syndrome have an increased risk of negative effects due to anaesthetic use up to and including death. We’ve lost five wee warriors as we call them, in less than a year since Weston’s diagnosis last October.
As you can imagine, driving to the IWK felt like it took ten hours instead of the usual five. Not much was said during the drive. Instead I found myself holding my breath as we crossed the New Brunswick border into Nova Scotia. With tear filled eyes, I wondered if I’d be bringing him back to New Brunswick alive. Checking into the hospital wasn’t much better. Thankfully they are all so wonderful and very understanding at the hospital.
This year I’m especially thankful to the Williams Syndrome community of parents who provided me with information on how to get my son a second opinion on his heart from a world renowned expert on his rare syndrome.
I’m thankful this second opinion found things that ended up being missed. I’m thankful to his wonderful cardiologist, Dr. Wong who collaborated with the Williams Syndrome expert to figure out how to proceed with this new information. I’m thankful Dr. Wong also collaborated with his colleagues at the Hospital For Sick Children in Toronto, ON to develop a plan to give my son the best care possible.
I’m extremely thankful to the the team of anaesthetists at the IWK Children’s Hospital who studied Williams Syndrome so carefully and sat down with me to hear my fears and understand my concerns. They promised to take every precaution necessary to do their best to put him to sleep knowing the anaesthetic could cause him to go into a major cardiac event that could cause his death. They were going to prepare for anything and make every attempt to safe his life should something happen.
I’m thankful for the nurses that held me as I fell apart when I passed him over not knowing if I would see him alive again. I’m also thankful for them to let me run back in for “just one more kiss” before his test.
I thankful for the phone call that said, “he’s awake and we’re ready for you to see him.”
I’m thankful to the nurses who took wonderful care of him, checking is vitals and blood pressures making sure he stayed strong. I’m thankful to the nurse who helped me hold him when I was so overcome with emotions when I saw him for the first time after his test.
I’m thankful to his team of cardiologists from Halifax to Toronto to Arkansas who go over all his test results with a fine tooth comb to ensure his heart continues to do well.
This thanksgiving, I’m thankful for all the wonderful people involved in my son’s medical care but most of all, I’m thankful he’s alive and celebrating thanksgiving with us this year.