Lucky Number 13

 A couple of weeks ago we celebrated Rory's first "ampuversary"; the 29th April was a year since the Big Op, and a chance to reflect on all that Rory has achieved (and grown!) within that time. We continue to be amazed by how well he has adapted to his disability; he's like a monkey; constantly climbing, using all his limbs to scale furniture, large toys, anything he can get a grip on. We hope his fearlessness and curiosity will stay with him for life, and carry him through turbulent times. 

Little over a week later Rory was back in theatre for his thirteenth surgery, and actually the first op since his amputation. Despite the many trips back and forth to the Blatchford prosethetic centre in Sheffield for casts, measuring and collecting legs, this was our first time back at the Children's Hospital. This time around was for some reconstruction work on Rory's limb, which was giving his orthopaedic and plastic consultants some cause for concern. Where there is a large area of skin graft on Rory's limb, the absence of sufficient fat/tissue underneath that section has caused the skin to attach to the bone, giving it little to no flexibility to stretch. As such, despite Rory growing the skin graft is not, meaning that it's getting tighter and tighter, and pulling his leg into a bend where the two bones are fused. Surgery was required to (1) release the tightness of the skin and redo the graft, and (2) reset the bone back into position. 

Op Thirteen, unlucky for some, has been rescheduled three times since November for one reason or another, so it was actually a relief to finally make it to this one! It was certainly starting to feel unlucky for us.

Fortunately for us, 13 went smoothly. 

There were a lot of nervousness from Pete and I going into this. Mr F, Rory's orthopaedic surgeon, intended to insert a metal plate into his leg in order to straighten the bone. Miss T, Rory's plastic surgeon, was planning to insert a balloon under his skin (called an Expander) which would be inflated by injection on a weekly basis for up to four months in order to create (by stretching) a bubble of excess skin which could be used to regraft the area. This would mean a constantly growing thigh, therefore no prosthetic wearing all summer in addition to weekly hospital trips. Not to mention me living in fear of it popping! In addition to our worries about the intensity of the operation, we were also extremely aware of the fact that Rory is now a year older and more than capable of expressing his opinion. He's stubborn, and when he doesn't want to do something he makes the fact known, loudly. In addition to having the strength to pull out cannulas, he now had the awareness of what is going on and therefore the motivation to resist. Thank goodness our fears did not manifest and he was absolutely fine! The lovely team on Ward 2 seemed so pleased to see us again - and recognised us all straight away despite our twelve month absence. We relaxed, which meant Rory did too, and as always we tried to make SCH a positive and fun environment, which the nurses and the TAU team helped with massively. 

Rory went into theatre at 2pm, and didn't come out until around 7pm - it was our longest wait to date and there was certainly a point where panic started to set in. But all was well and the feedback from his consultants was positive:

- Mr F advised that the plate he inserted may not necessary fix the bend at this moment in time, but would certainly stop it getting any worse in the meantime. Further surgery will be needed in about a year's time to remove the plate and determine next steps to fully correct the bend. 

- We were very pleased that Miss T had decided against the balloon in the end. She had managed to manoeuvre enough of Rory's chunky, fatty thigh and stretch it over the graft area. In doing so she and her team had re-covered 75% of what they'd needed to cover, and she was satisfied that this would suffice for the meantime. Rory will go back under the knife in a few months' time, once he has grown a bit more (made more chub!), to cover the remaining 25%. Ergo.... plenty of biscuits for Rory, we need to grow that fat!

We had expected to be kept in hospital for several days to recover, but once he'd woken up properly from the anaesthetic he was crawling around the room and climbing onto the window ledge. At 9am the next day (Tuesday) he was ready to be discharged. By Wednesday he no longer needed any pain relief, and by Thursday he was back in nursery! It's as if nothing has happened, which seems completely bizarre to us but then again is just the norm for Rory. He's always incredibly resilient when it comes to recovering from injuries and operations; I don't know why it continues to surprise us. 

Just out of theatre - chocolate raisins make everything better!

Unstoppable

It hasn't been 100% positive though. We are starting to realise that Rory is developing greater awareness of his condition and how it compares to those around him. Last week Rory was tugging at his bandage and happily declared "new foot!". The idea of him expecting to be 'fixed' is upsetting, not being able to provide that for him is even more tough, and I fear that's only going to get worse as he experiences more of the world. Instead, we had to redirect that excitement towards the new prosthetic ("new leg!") that he will need re-casting for imminently. 

Today Pete and Rory were back in Sheffield for a dressing change. The nurses are really pleased with how well he's recovering, and we're thankful that the wound is showing no sign of infection. We'll do the next dressing change at home, as we've done plenty of times in past, and email photos through to the Ward for their verification and records. Then the following week we'll hopefully have stitches out and can get a Prosthetic appointment scheduled. His current leg won't fit him, so the more we can minimise this lost walking time, the better!

Before & After (the After isn't fully healed and shows stitches)

In the first image the grainy part right in the middle is the worst of the tightness, and you can see the outer edges being pulled in. On the right is how things are looking one week on. Obviously it's still recovering and the stitches are visible, but it's clear that there is so much more fat and tissue underneath the skin that will allow comfortable growth. Thank goodness for baby fat!