A whole year off!!

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We had a week of visiting hospitals last week as Billy had his four month post-op check for his head at John Radcliffe in Oxford and a check on his kidney in Southampton.

Good news in both cases 🙂 the craniofacial team at the JR are really pleased with him, his head is now within normal parameters and we don’t have to go back for two years! Think I may have done a bit of a goldfish impression when they said that but past cases suggest that as Billy has no problems now they won’t develop in the next couple of years (skull wise anyway!) so in the words of his consultant ‘there’s no point us coming in just to say hello’ we can still call if we have any concerns obviously.
Southampton General also pleased with Billy’s kidney. The ultra sound showed that the kidney that had the blockage is still a bit larger than his ‘normal’ one but that was expected and its no longer messily dilated and causing problems, so back in a year the check on progress there.

That means a whole year without a hospital appointment (hopefully!) It’s taken a while to sink in but now it has it feels great!


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.

John Radcliffe Appointment today

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We had a check up appointment with the Cranio facial team at the John Radcliffe Hospital today.

Everything seems to be ticking along nicely, Billy’s head is a bit longer than our last visit and his forehead a little more prominent but nothing to cause alarm. Consultant said as things stand Billy will need the front and back of his head re-modelled but they will decide for definite when he is admitted for surgery.

Still no exact date for surgery but Consultant said we are looking at the end of the year (so right in the middle of the initial 12-15 month estimate) and our date will be sent out to us soon.