My brave little Tricky has had his operation (to be specific he has had a Spring Cranioplasty... big words make me feel smart) and everything went perfectly! I'll do my best to keep this at a readable length, but I make no guarantees - there are way too many thoughts zooming around my head right now.
Tuesday
I woke up feeling physically ill - I had butterflies in my stomach and half a tonne of bricks on my chest. I made up for my previous lack of tears and then some - anything would set me off from a nappy ad (sad but true) to seeing my boy sleeping soundly. The sense of helplessness was immense and the day went by in a blur. I didn't manage to get to sleep until 1am - add in Tricky getting up at 3am for a feed and I ended up getting about three hours sleep.
Wednesday
Tricky had to fast for his operation so to try and have him feeding until the last possible moment he was allowed, it meant I had to be up at 5am. I was worried about him being starving hungry and screaming for a feed. When that happens the doctors recommend that you give them to someone else to settle, because all poor Tricky would be able to smell on me was his elusive breakfast, which would make him scream even more... and as much as I didn't want him distressed because I don't like him being upset, I was also concerned that I would break down at that point.
Tricky and Roary the Lion waiting to go in
At 8.30am Hubby had to kiss us goodbye as only one parent is allowed to go to pre-op. Even the colourful walls and abundance of toys couldn't disguise the fact that this room was a pretty sad place to be. I held Tricky and walked back and forth with him, rocking gently and singing. I watched the clock like a hawk. Each minute seemed like an hour and I remember thinking if the lead up to the operation feels like forever then how long will it feel when he's actually in there? He fell asleep in my arms and even though I'd been holding him for so long and my back was now aching and my shoulders burning I didn't dare put him down... I just snuggled in to him and kept singing in between talking to anesthetists and nurses. At 9.20am they took him from me and a volunteer led me out in to the 'Friendship Room' where Hubby and the rest of the parents were waiting (drinking tea).
For two long hours we sat there pretending to read magazines while the neurosurgeon cut an S shape in Tricky's scalp to expose his skull. Then she drilled two small pilot holes and connected them using a miniature circular saw to cut through his fused saggital suture. At this point the craniofacial surgeons stepped in and screwed two omega shaped springs in his head. These springs will put outward pressure on the pieces of skull causing it to part and new bone will grow in the gap - just like any broken bone. In three to four months he'll get them taken out (so again I'll go through the pre-surgery jitters!).
When I was allowed to go to recovery to see him I felt so nervous. Would he be screaming? What would he look like? I had been told he might be swollen to the point of being unrecognizable. But there he was, held in a nurse's arms, his head bandaged (a beanie knitted by a volunteer covering it) looking otherwise normal apart from all the tubes coming out of him. He was hooked up to oxygen, a saline drip, a morphine infusion and a pulseox (measures pulse and oxygen saturation) - all of which continuously beeped and buzzed.
We made our way to the ward and even though he was dosed up on morphine he was able to feed straight away - which was a great accomplishment not only for him, but for me because holding a baby connected to machines isn't easy!
Tricky and Roary one hour post-op
The next few hours he slept a lot but was woken up for hourly neurological obs which consisted of checking his limbs for equal strength and checking to see that his pupils were equal and reactive. Have you ever tried to get a crying baby to open his eyes so you can shine a torch in? Here's a tip: don't. It wasn't until 8pm when the drugs from the operation were wearing off that he made it known just how much pain he was in. He cried and cried and cried. Then, just to keep it interesting, he wailed and screamed. Nothing would comfort him - he wouldn't even feed. The nurses decided to give him the first of four morphine boosts and it worked instantly - his eyes glazed over and he just stared in to space. The lights were on, but nobody was home and it was scary - where was my Tricky?
Thursday
Almost exactly 24 hours post op when the back of his head had doubled in size and his eyes were swollen half shut and I was singing his favourite song, he smiled. The relief at seeing that smile is indescribable... he was back, my boy had made it through and I cried tears of joy. A few hours later I was able to put him down for the first time - before this his head had been too sore and he would scream as soon as it touched the bed, so I had held him since he had come out of surgery over 30 hours earlier with only a few breaks where Hubby was able to cuddle him or a nurse held him while I bolted to the toilet.
At midday he was taken off special care nursing (where he had his own dedicated nurse who had no other patients) and shared a nurse with the boy in the bed next to him - a 14 year old who had broken his neck in a motorcross accident and was waiting for surgery to affix a halo to his skull.
Friday
By the 48 hour mark the improvement in him was amazing. One by one the machines were taken away and he became more and more alert. The surgeons came to see him and gave him the all clear to go home - we had spent only 50 hours at the hospital after his surgery. 50! I can't believe how quick it was. The first thing I did when we got home was have a shower and go to bed because out of those 50 hours in hospital I'd only managed to sleep for about four of them (in a chair that was only comfy for the first hour) and I was exhausted - both physically and emotionally.
So here we are, three days after surgery and he's doing so well - his pain is being managed with paracetamol, the occasional ibuprofen and lots of cuddles. When he's older I will tell him all about how he got the S shaped scar on his head - which we've called his Superman scar - and hopefully he might even think it's cool.
I'd like to say a massive thank you to all the people who sent their best wishes, who kept Tricky in their thoughts and to those that prayed for him. Your kindness and support has been overwhelming and definitely helped me get through this difficult time. I am forever grateful.