I was very open on my Facebook page a few weeks ago about Rubeon going in for squint correction surgery.
It was a long time coming. We originally had it booked in for May, but due to Rubeons shunt failing on the weekend prior, we and he doctors agreed it would be best for him to postpone the squint surgery to allow his body to recover from the shunt surgery instead.
It took a bit of chasing on my behalf to find out when it had been rescheduled for, but I eventually received a letter for July 3rd 2018. We had to be there for 11am, so I made the necessary childcare arrangements for Lily and William as soon as I got the letter. Thank goodness for grandparents! (We’d be a bit stuck without you.)
On the day of the surgery, Lily had stayed at nannies the night before and we dropped William off to his Aunty Annies in the early morning and hit the road. We made it in good time and found the day surgery ward. It was quite nice actually because we were put in a side room called E Bay, (yes, I made the joke about selling him! I know, I should have been a dad with jokes like this.)
We waited around for ages, Martin was getting antsy and I was fed up. Poor Rubeon had been nil-by-mouth since 8am, and it was getting on for 12pm. Bless him, my little man was so hungry by this point! side note* i am still exclusively breastfeeding Rubeon, and I didn’t think about the repercussions of not feeding him all day…cue big overfilled wonky boobs!
Eventually a nurse came in, tried to check his obs but getting his BP is always a tricky one, only a few have ever successfully done it. The nurse was really good though and went off to find out the surgery roster to see where Rubeon was on the list, and if he could have a feed. As kind as this gesture was, we hoped that Rubeon wouldn’t be allowed a feed as that would mean he was closer up the list to being one of the first into surgery. Luckily, he was! He was 2nd on the list! *phew* We met the surgeon and anaesthetist, signed the consent forms and and we were expecting to go down around 2/2.30pm. So we waited…I took Rubeon up and down the corridors in his pushchair to settle him and get him to sleep. It worked for a short while, but he was soon awake and crying again. It’s awful not being able to feed your child…
Eventually two porters arrived at 2.45pm to take Rubeon down to theatre. We were allowed to go with them, and once again we met the surgeon and anaesthetist and all the other hands in the surgery. I was under no pretence that Rubeon might well have to have his surgery again in time, but what I wasn’t expecting was to be told “this won’t be perfect.” At no point were we told this. I was under the impression he would have two central eyes, and I definitely wasn’t expecting to hear it whilst standing on the other side of the surgery room doors.
With this thrown at us, I was taken aback, but hoped for the best. We were allowed into the theatre room, where I got to hold Rubeon whilst they sedated him with gas. (To the joyful songs of The Wiggles no less!) I then placed him on the operating table and gave him a kiss and we left him in their hands. This all took about 45 minutes from the ward to the table, so it was about 3.30pm when he went down. (And no, they don’t take the eye out of its socket to perform this procedure!) At the reception desk, we were handed a pager which would alert us when Rubeon was in recovery and we could go see him.
We were told to expect it to last around an hour, so Martin and I grabbed a Burger King from the food hall, and waited for the pager to beep. Eventually, after what felt like forever (it was an hour…) the pager bleeped and we got to go see Rubeon in recovery. It felt a bit like Christmas, waiting for his eyes to open. I wanted to see the change, how different he’d look and how it would change his sight for him. Admittedly, I was sad about the correction in a way too, as it had just become part of him. It WAS him, but I knew this was needed to better him and his quality of life.
In recovery, we were called a bit too early, as the anaesthetic was still pretty strong and he wasn’t ready to wake up. So we just sat and watched him sleeping peacefully. His eyes were puffy, and he looked pretty pale – even for him, but I think I would have too if I hadn’t eaten all day and then undergo surgery!
He woke up with a start with big wide eyes. I was expecting them to be bloodshot and red all over, but they were still white and ‘normal’ except the inner part where they’d conducted the correction which was red. But nowhere near as bad as I was expecting!
Once he was fully awake, I fed him! *hallelujah* we were both so ready for it, him starving and me with swollen boobs. He’s always come around after surgeries so well! We also met with the surgeon who was pleased with the outcome and we headed back to E Bay. (The porters also made the selling joke! It wasn’t just me!)
Rubeon was pretty subdued on the ward, still pretty pale and not very chatty. He slept some more and the nurses came and did their obs (tried at least…) and he was put on the SATs monitor.
Initially the nurse wasn’t happy to let us leave as his SATs kept dropping to 90 when he slept, but that’s just him. He did this after every surgery, and eventually around 8pm we were given the go ahead to be discharged and go home! It was an emotional day, I cried after the surgery because the surgeon seemed so pleased with the correction, and I couldn’t see the difference.
I felt like I had put Rubeon through an unnecessary procedure, I wanted to see the difference everyone else could, and I couldn’t. I was angry that the surgeon seemed so pleased, and it didn’t look any different. After rationalising with Martin, and both his and my mum, I took a breath and agreed to give it a week to calm down, heal and see what became of it.
And I’m so glad I did. The next day, sitting up and Rubeons eyes were *almost* central! They didn’t stay like it for long, but his left eye (his worse one) actually pulled out from looking at his nose! I couldn’t believe it. The anger was still there at the doctors for them not explaining it might take a few days to settle (as I was expecting instant results.) but for Rubeons sake, I was glad it had been a success.
Over the last two weeks, Rubeons eyesight has gone from strength to strength. Previously, he wouldn’t really focus on much for long, he lost interest and was soon gazing elsewhere. If we made a sound or rattled a toy he looked for the sound. And now? Now he follows my hand when I wave it over his face without making a sound. He follows it up and down, side to side. My hand. And when he looks at the world around him, it’s a face of wonder and awe, literally as if he’s seeing the world for the first time. Which in a way I guess he is!https://bringinguptheberneys.com/wp-content/uploads/2018/07/img_0163.mov
It’s not perfect, as the surgeon said. They still fall inwards, when he’s laying down or tired. But it’s a major improvement for him, his eyes CAN move now, it’ll take time (and possibly another surgery) to make them even more central, but for now I am just happy that he’s had an improvement and the most important factor for me, is that he can see.