Surgery Hokey-Pokey

 We're in, we're out, we're in again!

Out

In my last post I wrote that we were expecting surgery in June, straight after we'd got back from Disney, but due to admin issues within the Sheffield Waiting List team we'd lost our priority status and dropped to the bottom of the list, therefore were not likely to be seen until August/September, best case. At the time, we had said that we didn't want Rory starting his new pre-school without a leg, because we wanted him to have the confidence to make friends on an equal footing, so to speak, as opposed to have some activities restricted due to being wheelchair bound - after his operation he'll be without a prosthetic for up to three months as we wait for his leg to heal, then be cast, then the prosthetic to be made, then fitted, then tweaked. We told our team at Sheffield that we were happy with anything from October half term onwards. That was the last update I shared, back in August. Fast forwarding...!

In

In September we received an appointment letter from Sheffield. It was very minimal in terms of detail (they always are) and simply told us; "Paediatric Surgery, 19th October, 9:45am"

Our thoughts were, this is great, it's just before half term so he'll have a couple of weeks to recover. We were more than satisfied with this. Pete and I booked the days off work and we prepared Rory, telling him that we were going back to see Theo and that he was having an operation on his leg. We talked about the different medical equipment they use for anesthetic and obs; things that in the past he hasn't liked. We practiced with his toy medical bag, and talked through what would happen and what it would be like afterwards, making sure we emphasised the copious amounts of medicine and sweets he'd be able to enjoy!  We were all ready.

Out

A couple of weeks later, however, we got another letter. This time it was from the Waiting List team, apologising that we were still waiting and reassuring us that we hadn't been forgotten and were still on the list. Confused, I rang them to question the letter. "We already have our date" I explained. They checked Rory's records and confirmed that no, we had no date and were still waiting. Upon looking into it for us, it turns out that "Paediatric Surgery" isn't surgery at all. 

Paediatric Surgery is the umbrella term for the department which includes the Urology team, so the 19th October was a check up appointment as it had been a year since his reverse ureterostomy. No surgery, just a "hello, yes he's fine thanks, goodbye." We were gutted; we were mentally prepared and looking forward to getting it over and done with. 

It was our fault really, we should have spotted that the letter didn't say "Orthopaedic Surgery" which it would have done had this been his leg operation. Back on the waiting list we go!

Due to a combination of doctors' strikes, an infection breakout in theatre, and our consultant being on holiday for a few weeks, we were advised that we hadn't fallen on the November or December surgery lists, so it was going to be January at the earliest. We resigned ourselves to nothing happening this year now, and booked a week away in December. 

In

Meanwhile in November, we had a clinic appointment with Blatchford, Rory's prosthetic centre. As part of that discussion Pete pointed out to them that there was a red patch on the side of Rory's limb which was really firm. It seemed to be getting worse, and we were worried that it could be the pin inside Rory's leg being pushed outwards. We wanted their opinion, and they agreed that this should be something that Mr F (Rory's main consultant) looks at urgently. I followed up a few days later with Mr F's secretary and emailed across some photos for him to review. I got a call back Tuesday afternoon asking to bring him in for 8am the following morning! Cue a quick email to school to let them know about the last minute absence, and off Pete and Rory went. Mr F suggested that this wasn't the pin, but in fact it was Rory's bone. 

The dark red patch in the middle of the photo is the hard bump

Where he doesn't have a knee his top and bottom leg bones are pinned together to stop them bending any further while we await this next round of corrective surgery - see my rubbish drawing below! 

 Unfortunately what has happened (not necessarily unexpectedly) is that as Rory's bones have grown in thickness the gap has become more pronounced, and where the bones are apart they are causing this ridge in his skin. Next rubbish drawing below! Note; it isn't a gap of air, it's filled with cartilage and normal leggy 'stuff'- you can't put your finger in it. 

The bend hasn't got worse as such, it just appears more prominent because the bones are wider, so the gap appears bigger.

This was what this next surgery is supposed to correct, but the fact that it was causing Rory redness and was sore meant that it now became a priority to act fast - to break where necessary, re-align and re-pin. 

I'd hate for Mr F to read this blog at any point - he'd probably say "no no no, you've got it wrong!!!". But to his credit, I do feel like I've completed a module of paediatric orthopaedics throughout the past three years! 

Anyway, back to this appointment and planning for surgery. Mr F checked if we had any plans (we told him we'd booked this trip in December) and he said the team would be in touch with a pre-Christmas date. 

Last Friday we got the date.... you guessed it, during our holiday! I was very frustrated, not at the hospital (it's all they could do squeezing him in at short notice) but just at the circumstances. We'd been really looking forward to this trip and now were faced with the prospect of cancelling. I really didn't want to postpone, so we've decided to sod it and go away anyway, but instead of leaving on the Friday as planned we would leave on Thursday early morning, and make a beeline to Sheffield to be there for 7:30am. 

So here we are, back in! Surgery #16, we are ready for you.

One benefit is that his letter states that two parents are allowed in TAU. What a strange but welcome experience, to finally be in this pre-Covid era!

Due to the changing shape of his bones and the uncertainty around their final length, he will probably need reconstructive surgery on a semi regular basis for most of his childhood, certainly for the next few years. Tweaking, shaving and pinning here and there to make sure they're aligned and knitting together properly. This is just part and parcel of Rory's disability and our reality, so we crack on with life, destined to be forever on some sort of waiting list!