Extended Stay in Edmonton For Open Heart Surgery

Hello! My name is Amanda, and Alex is my 16 year old son.

Alex was born with Aortic Stenosis and Bicuspid Aortic Valve Disease.

When he was 3 months old, he underwent a balloon valvuloplasty. Balloon valvuloplasty is a cardiac intervention to open up stenotic or stiffened heart valves (e.g., aortic or mitral) using a catheter with a balloon on the tip. It is also known as balloon valvotomy. We have been traveling to the Stollery Children's Hospital ever since. First, every 3 months. Then every 6. Now, we go once a year for regular checkups, ekgs, echocardiograms, stress tests & MRIs. These tests help monitor for renarrowing of the aortic valve and blood regurgitation at the original surgery site. Aortic regurgitation is when the aortic valve leaks and blood flows back through it into the left ventricle, and can lead to left ventricular hypertrophy. Left ventricular hypertrophy makes your heart less efficient and can ultimately lead to heart failure.

I recently received notice that Alex will need to undergo major open heart surgery at the Stollery Children's Hospital in Edmonton to replace his failing aortic valve with a mechanical valve. When I first got the call from our cardiologist (April 16) I was told that it would need to be done within the next 2-4 months. But a phone call from the surgeon's office this morning (April 19) has the cardiac surgeon recommending that the surgery be done as soon as possible, and now we're looking at a possible surgery date as early as the 9th of May.

This surgery will require a significant amount of time away from home. We'll need to be in Edmonton 2-3 days prior to the surgery date, for testing to be done. He will then spend a minimum of one week (as long as there are no complications) of inpatient recovery time in the hospital, followed by one week of outpatient monitoring (discharged from hospital, but still required to be in Edmonton) before we can come home. So, including travel time to & from Edmonton, we'll have to be away from home for approximately 3 weeks (under perfect conditions).

My partner and I have six children between the two of us - four who live with us full time, and two who are here part time - and we are a single income family, as I am currently not working due to my own fight with leukemia. When surgery time arrives, our single income will be being split between the costs associated with an extended stay in an out of province city (accommodation, gas, food, etc) and our regular living costs (rent, groceries, utilities, etc) plus childcare costs for our 6 y/o twins while I'm away and dad is at work.

My mother will be traveling with me, as I am on daily chemo pills that make me dizzy and I cannot drive long distances by myself.

In an effort to help offset these costs, I have started this GoFundMe. I have started the application process for a few different charities, as well (Ronald Mcdonald House, HopeAir, etc). I'm trying to cover as many bases as I can while working to get things figured out. It's all just happened so fast.

If you've taken the time to read our story, I thank you. And, if you've donated, I really appreciate your helping to make this little bit of chaos in our lives a touch less stressful.

You can find a shareable post pinned at the top of my facebook profile.

https://www.facebook.com/share/p/i1jpw9BkZoQHxHhj/?mibextid=oFDknk

Best regards,

A very stressed out mama