Surgery no.3 and it won’t be his last.

The 18th of January , the day Kye is having his 3rd operation in his little life and it won’t be his last. It might be too many a routine procedure. Grommets (Kye’s second lot), adenoids and tonsils. No surgery doesn’t come with risks. But for someone like Kye and many others with his condition. It’s even just a little bit riskier due to his smaller nasal passages. We’ve been told that his condition can cause issues with anesthetic ( waking up ).

Two of his surgeries happened before we found out that Kye had Sanfilippo Syndrome and again any child/person going under is scary and in some way I’m glad I didn’t know when he was just 7 days old having his first surgery to repair two hernias. I still remember that day. A new mum, breastfeeding just figuring it all out and thinking ok this is it and everything will be ok from here on out… how wrong was I. There is some peace knowing that it isn’t just Kye with the risks.

But, something is different. Maybe because I know this is one of the many he will be having in his short life and some won’t be as easy/routine. I hate that stupid genes mutations made this be his reality. Our reality. That it’s not just going to be a broken bone from a bike or from playing too rough at school or getting stitches from the many sports he was to play. I wish it was this as funny as that sounds. Maybe it’s also the fact that recovery is different now. He doesn’t eat jelly or like juice or things like that and giving his medication is hard enough without him choking because of his condition already.

He doesn’t understand. He won’t ever really grasp the magnitude and why mummy and daddy are holding him down or why we are letting him be poked and prodded. He doesn’t know how to communicate pain or if he feels sick. It’s always been too late. It’s knowing how well he’s been doing and knowing that this is going to rock our family units sleep and schedule a lot. Him having time away from school that he's just gotten back into, it'll be an adjustment for all this next week or two.

We didn’t even know he was going to get the surgery this week. We got a call two days before saying there was a cancellation and we took the chance knowing right now he’s the most “well” he’s been and with my mum being on holidays. To be honest I don’t think there is a right time for anything and we will get through it somehow. Maybe I’m exaggerating how it’ll be but it’s always better to think worst case because, I’d rather be less heartbroken then not knowing how shattering it’ll be for him. If anything Sanfilippo syndrome has done to us is to always expect the worst, just in case. We've had our hearts broken too many times to always think positive in certain situation or as I should say "shit"uations.

Our Kye though. Is unbelievably tough and strong. we always think it might not get better or he's losing more speech and yet always surpasses our expectations and makes us unbelievably proud by picking up new skills. The thought of him waking up and not knowing and being In pain. Hurts. Knowing I won’t be able to be there. Even to just support Jack as I know it’ll be hard being the one with him alone and knowing he’s going to have to restrain him as he gets put under. Being at home with him not here is strange and eerily quiet. This. All of this is worth it though. its been a whole year and waiting. Knowing we had to wait for there to be a ICU bed for “just in case”… Your heart sinks a little. It’s different knowing it’s his third surgery and the worry never stops. The what if’s go through your head. It’s the how many will he have to endure this. Yes it’s for a better quality of life but to me quantity is better than quantity if it’s causing him pain that he doesn’t have to go through one day. It’s saying ok when will it be a no we can’t put him through that just because we want it for him to still be here. It’s selfish . We need to be selfless in giving him what he wants and that’s love and compassion. Again I hope those thoughts are as far away as possible. But unfortunately that will be something at some point we will have to face. It’s a shattering inevitability. One that will take him away from us and we have to be the ones who witness it take every little bit of our boy.

So the 18th of January, Kye will be having his third surgery at the age of four. That might be big or it might be small but it is way more than I ever thought he’d be going through. He is the most bravest little boy I know and I’m relieved to know he won’t remember it and he doesn’t know why. But we will, always. He just loves life and doing all the things he loves. Let’s hope we can give him the best quantity of life and try and make the quality he has , better. #smileforkye