Yesterday we had an appointment with the cardiologist. It was all over in a few minutes. In fact it was all over by the time I joined them at the hospital after getting the older boys to school. The result is we will be getting an appointment for a cardiac catheter in the next few months. What this means is that Finlay will fly up to Auckland on the North Island of New Zealand with Vicky and spend a few days at the hospital. All the paediatric cardiac specialists in the country are based in Auckland.
We’ve been waiting for this for a while but the realisation of another imminent operation still fills us with dread. He had open heart surgery at 6 months old but only some of his problems were fixed. For the rest we adopted a wait-and-see approach. We’ve done the waiting, this next op is the seeing! The main problem left with his heart is that the right ventricle (the one that pumps blood to his lungs) is too small. This op will let the surgeons see whether it has grown sufficiently in relation to the rest of the heart for them to do a quick patch up job and send us on our way or whether there will need to be some major replumbing to take the strain off his small right ventricle.
Next year, Finlay will turn five. In New Zealand children start school on their fifth birthday, whenever it is during the year. Quite a nice way of doing it, each child having their special day. For us it’s more than the start of his journey through school: it’s a line in the sand for his heart. The cardiologists want to have his heart sorted before he starts school. They see little benefit in waiting longer and they don’t want his schooling to be disrupted by major heart surgery. So we’ve always known that cardiac surgery would happen sometime in the next year.
So what will happen is he will be put under general anaesthetic while a catheter is pushed up a vein from his groin all the way into his heart. Finlay has a hole between the right and left atria that was left open during his previous surgery to relieve the pressure on his small ventricle. Once the catheter gets into his heart they will stick a balloon in the hole to block it and measure the pressures within the heart. If all is well then they’ll schedule an op to close up the hole and all should be well. If, as seems likely, things aren’t so good, then a more complex surgery will be needed to take some of the blood returning from the body and redirect it straight to the lungs bypassing the heart, thereby easing the pressure on the heart.
The catheter operation is about as simple as heart surgery gets but is still far from a walk in the park. There will be a general anaesthetic which is never nice. We will have the fun and games of nil-by-mouth prior to surgery with a diabetic while trying to deliver him to the surgeons with his sugars at a good figure. In a different hospital all the staff will have to get to know his case. With him being the only one with his condition in the country only those that saw him three and half years ago will ever have seen a case like him. Hopefully those that do remember will be able to make it clear that his mother knows what she is doing when it comes to his diabetes and she should be listened to. Back at home his brothers are old enough to understand why he won’t be at home and they’ll have to suffer my cooking for a few days – we all suffer for this disease!
A year from now our son will have his heart fixed, perhaps not 100% but hopefully to a level where he will be able to live a full, productive life doing all the things he wants to. We’ve always been determined that diabetes shouldn’t hold him back, the surgeons can hopefully ensure his heart doesn’t either.
So the upcoming operations are a positive step, another milestone on the path to beating his disease, but it’s only natural to be nervous. The necessary suffering he will endure and the inherent risks, all the risks. He’s so small. He shouldn’t have to go through all this.
Blissfully unaware of what's coming
So for now we carry on with the day-to-day, waiting for the letter……the rollercoaster rides on…..