We are very thankful for all the research and advances in technology. If it wasn't for this we wouldn't have had the pleasure to have a wonderful son like Samuel.
Samuel was diagnosed at 5 months gestation with Hypoplastic Left Heart Syndrome. While being pregnant we had alot of ultrasounds and doctors visits in preparation for his delivery. Having had this knowledge before birth was very helpful in giving us the time to prepare for everything that was to come. But at the same time nothing could have fully prepared us for what we were to experience with our new son.
A Natural Delivery of Samuel was scheduled at Mount Sinai Hospital in Toronto which is adjacent to Sick Kids and connected by an underground tunnel. Once Samuel was born he was taken away and prepped to be transported to Sick Kids. Immediately tests were done (this was at 4am) and doctors were looking over him in CCCU.
Little did we anticipate that Sick Kids would be our world for the next month. At 10 days old Samuel would have the first of 3 planned surgeries "The Norwood". There were alot of ups and downs, medicines, machinery and heartache. But with the support of the team we took our boy home at one month old. We had become in a way nurses and doctors. Inserting NG Tubes, giving blood thinners by needle twice a day, administering 5 different medicines throughout the day referring to our chart that stated times and doses. Our lives had been transformed.
Then at 5 months old Samuel started to display signs that he was ready for the second stage surgery. The Glen. Again there were ups and downs, not as much medicine this time, however alot of support from the team. But this time it was harder to see him go through the surgery because there was that connection with him and you could feel his pain as he was recovering and trying to understand what was happening around him. Once again we went home. This time there was less medicine and samuel did well. So well that we were starting to forget about the heart condition and see him as more of a little boy.
Now Samuel is 3 and since the glen he has had two operations to correct minor issues to his LPA in order to be a candidate for the Fontan. We are currently planning and prepping for this last surgery.
At the moment he runs around like any boy with limitations of course. There is alot of vomitting when he runs and/or gets upset. He is learning about his body and understanding what he can and can't do. All in all we are letting him be him and explore himself on his own because just like you and I we learn our limitations and adjust to them. He rides a bike, goes swimming, climbs the jungle gym, is silly, wonderful and smart everything a little boy should be and be experiencing.
We send our thanks to Dr. Calderone of Sick Kids and appreciate all the hard work that is being done. And everyday we are reminded just how wonderful of a place Sick Kids is!!!
Mike and Nancy Potapczyk