Operation time


Billy has just gone through to theatre – now we just have to wait


Dad Post – changes



I think I’ve said this before, but I just want to let people know this post has been written by Dad, so be nice!

As is the case with almost every visit to a hospital, plans change. As has been my experience, every time the plan changes, people say that this is definitely the new plan and everything will be the same from this point on. Until something changes. I just wanted to chronicle some of the changes to the plan that can happen in one 12 hour period.

There was some uncertainty as to what they would actually be doing for him. First they were saying they would operate on his forehead as well, then they said it wasn’t too bad, then they said they might still need too. In fairness, they have always said the exact outcome if the operation will depend on what they find when they are doing it.

We still don’t know if there’s a free high dependency bed for him so the whole thing still might not happen.

They called us really early saying ‘we usually talk you through things before you meet the doctor to go through the risks and nasty stuff and you’re booked to see him at 11, but he’s decided he wants to meet you at 8am, so can you be at the ward for then?’

This evening we went down to the main ward to admit him over night only to be told they don’t have a bed they think would suit him there and can we take him up to our room whilst still coming down to get some medication he needs the night before the operation.

I really want to point out that every member of staff has been amazing so far, and each one has helped us through the changes and given us what we need to keep going.

I’m starting to get a bit nervous, and the changes aren’t helping, I’ll admit that. My wife is saying I’m just being crabby. It’s a fair point, i probably am. Still, I’m usually someone who is happy to live without a plan, but this time I’ll admit I’m worried something will slip between the cracks in the normally seamless machine created by the sudden changes in temperature and direction.

Pre-op tests

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Half way through our second day of pre-op testing. We have seen so many people I can’t even remember half of them. Billy had his eyes and ears tested yesterday and blood taken, we also met with the geneticist. This morning we have spoken to his consultant seen he developmentalist and the speech and language therapist. Billy has for the most part been a real star and has charmed everyone.

Fireworks Billy style!

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Billy’s first piece of art work he’s brought home from nursery – glittery fireworks 🙂


A new operation date!


A couple of days ago we had our new operation date confirmed as 15 November. It’s only a week later than our original date so really pleased with that.
Cue a quick trip to the doctors to have his pre-op swabs taken (needed to be done roughly 2 weeks before op). The poor nurse had a real look of panic when she saw the she needed to take eye, nose and throat swabs from a toddler!
To be honest I was with her on this one and had gone fully prepared for an unpleasant half hour or more of trying to hold down/ distract a screaming Billy. Much to everyone’s surprise and relief he was a perfect angel. Just let her do it while sat on Daddy’s lap with me playing with his light-up car and he didn’t even cry! He was duly rewarded with his favourite ‘sweets’ and everyone was happy 🙂

Happy Birthday Billy

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Hard to believe it but our gorgeous boy is 1 today! Seems like the year has flown by so very fast. He was a very lucky boy and was spoilt rotten by our lovely friends and family.
Happy birthday Billy, mummy and daddy love you very much.

A slight change of plan


Found out today that there has been a slight change of plans with Billy’s operation. Unfortunately it can’t go ahead on the date we were originally given as one of the anaesthetists on the surgical team has needed surgery himself.
I hope he has a speedy recovery and that he feels better soon, from the little I know it sounds like it was a horrible surprise for him and I wish him all the best.
This means we now have two new potential surgery dates – 15th November if an anaesthetist is on board by then or 3rd December if it needs to be later in the year.

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