After being rushed to the PICU in the Stollery we were told that there was a possibility that Austin would get better with some med support, but within a couple of days it became evident that his heart was just too enlarged and weak to continue beating on its own. He was having runs of v-tach and was at risk of having a heart attack. On November 17, 2012 he had his first open heart surgery to have a Heartware Left Ventricular Assist Device implanted. It would be implanted as a bridge to heart transplantation. This was all foreign territory to us and we were so anxious.
Although the days proceeding were difficult and Austin was not "out of the woods", five days later he was out of the Pediatric Intensive Care Unit and up on the ward. From a medical standpoint he was doing exceptionally well and in mid December we were making plans for discharge. It was an exciting time! Christmas was coming and we were filled with hope and optimism for our Austin's future which was a welcome relief after the horrific roller coaster ride we had been on. Unfortunately there was another unforseen loop just ahead that would require us to hang on with everything we had in us.
At about 6:00 am on December 13, 2012, Austin had a major ischemic stroke. Doctors were not sure exactly what to do but after collaborating, decided to attempt a procedure that had never before been performed on a pediatric patient. It was not without risk and the radiologist who would perform the procedure didn't sugarcoat it. He flat out old us that "he (Austin) could die." We kissed Austin's flawless cheeks and watched as he was wheeled away to the OR on a stretcher. Knowing that this was potentially the last time that we would see our precious boy alive was excruciating. We waited and prayed and waited and prayed and waited and prayed until we were met by the first of a parade of enthusiastic doctors who came one by one to tell us that our "stars had aligned" and the procedure was a success!
The immediate relief was immense but we were informed that there were still many uncertainties. We didn't know how much brain damage Austin would have and there was concern that he could have a brain bleed or another stroke if there was another clot in the LVAD. We passed a transplant doctor in the hall who told us that Austin had been taken off the transplant list because he could have a catastrophic brain bleed if he was put on bypass for transplant should there be an offer. A couple of days later, Ian and I were called into the "quiet room" to meet with Austin's LVAD doctor and a doctor from the transplant team. There was no perfect solution and no promises made but they had decided to go ahead and re-list Austin at the highest status.
On the evening of December 28, 2012 Austin's nurse told us that one of the doctors from the transplant team wanted to meet with us. I had a strong feeling that there was an offer for a heart although didn't want to be too enthusiastic in the event that I was wrong. Before the doctor had a chance to meet with us, one of the pediatric heart surgeons came in and started making arrangements for surgery the next day. He said that there was a good offer for a heart for Austin!
We were ecstatic but we were also sad and afraid. We were so thankful to be moving forward - that there was hope for Austin to get better and live a "normal" life again. We were scared knowing that things can go wrong during transplants - I remember watching Austin cuddle his over sized teddy bear while wrapped in his plush blue blanket as he slept that night. I captured a few pictures of that night on my phone but many in my mind. I remember seeing the Basiliximab hung on Austin's iv pole and as it began to course through his veins, feeling like there was no turning back. Basiliximab is used for preventing organ rejection in transplant patients. I remember thinking of the family who was cherishing their last night with their son or daughter before life support was withdrawn and his/her organs harvested to save the lives of several, the very next day. When we felt guilt, doctors reminded us that someone wasn't giving their life to save Austin's. A friend sent me a cute little cartoon where one little animal (it might have been a lamb) was smiling and handing a heart to another cute little animal. They were both smiling. In that moment I could visualize Austin's donor choosing Austin to give his/her heart to before they left their human body here on earth. That brought and still brings me comfort.
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| Austin on his way to the OR for his heart tranplant |
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| Coming back to the PICU after transplant |
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| Austin was discharged a short 11 days after this picture was taken |
Today we are celebrating Austin's fourth heart transplantanniversary which always includes a prayer for our donor family and a balloon release for Austin's donor. We used to celebrate with cake too but decided that we have enough treats over the holiday season and want to honour his heart transplant in a more heart healthy way :-).
Austin is brave and resilient and honestly and truly loves his life even though he is now "chronically ill." It's not an easy journey - we continually have to choose hope over fear because a transplant is not a cure but realistically none of us has any guarantees and we need to take one day at a time and cherish each and every moment that we are given.
As we watch Austin "hanging out" enjoying his Christmas holidays like any other 12 year old, we are filled with gratitude that knows no bounds. We are forever grateful to God, forever grateful to our organ donor and his/her beautiful and selfless family, forever grateful to all of the medical professionals who work tirelessly to save lives like Austins, forever grateful to all of the family and friends who continue to love, support and pray for our family, forever grateful to the people who conduct research to improve the length and quality of life of organ transplant recipients....
"Without the organ donor, there is no story, no hope, no transplant. But when there is an organ donor, life springs from death, sorrow turns to hope and a terrible loss becomes a gift." - UNOS
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