He had his first heart surgery the next morning; and it would be 5 days later before I got to hold him again. After 13 days in hospital he was sent home on medication. When he was 6 months old he had his second heart surgery, called the bi-directional Glen. Basically this surgery rerouted the blood from the top half of his body directly to his lungs. I cannot begin to describe how awful it was to wait in that waiting room for the nurses to take him away knowing it was possible he might not come back. The nurses had to literally remove him because I could not let go. The first 3 days were awful, seeing him in ICU, paralyzed with so many tubes and wires and IV's. He had his surgery on Monday morning and we were sent home on Saturday afternoon; thanks to the miracle workers at Sick Kids. Because of so much trauma to his body so early in life his teeth came in badly decayed. He had dental surgery when he was 18 months old, where they removed the top front four teeth, did a pulpectomy on 2 molars, white filled his 2 eye teeth and capped his other 2 molars.

He was to have the Fontan surgery in Nov/00, which would re-route the blood from the bottom half of his body directly to his lungs. At this point the doctors felt that his heart function was not strong enough, that the chances of death or serious complications outweighed any benefits. So he was put on 2 different medications and went back every 6 months to have all the tests done again. Each time we hoped the medicine would have improved his heart function. The doctors discovered a new problem with his coronary arteries and his only functioning ventricle is working against itself. Half of the chamber squeezes in and the other half pushes out. Transplant was always mentioned as a possibility but in the beginning that was 20 - 30 years down the road; these new problems ment that it could become reality for us in a few short years.

After over 2 years of waiting and many more tests the doctors at The Hospital for Sick Children decided that Matthew was ready for the Fontan. In July 2002, Dr Van Arsdell turned my tired, blue boy into the energizer bunny! Matthew came through surgery again with flying colours. The transformation after surgery was incredible. Matthew has pink cheeks for the first time in his life. He can run around and keep up with the other kids now, something that he just couldn’t do before. He will no doubt require more surgeries down the road and will someday most likely need a transplant. But thanks to the skills of the doctors and the medical advances made, we should have 20 – 30 years before we have to worry about it.

Seeing your child in pain and being unable do anything is the worst possible feeling in the world. The waiting for surgery and handing over a child that doesn't look sick is another terrible experience. Normal everyday things suddenly become so important. The guilt and fear and all the what ifs that go through your mind never ends. What if he doesn't survive the next surgery, I should have stayed home with him, spent more time with him, are always in my mind.

Matthew started school in September and that brings a whole new level of worry and frustration; trusting others to look out for the welfare and best interests of my youngest child. So far he loves junior kindergarten and if you peaked into his classroom, you wouldn’t be able to pick him out of the crowd. That to me is a true miracle.