Two Steps Forwards, One Step Back

Recently Pete shared a great video of Rory walking completely on his own; not holding somebody's hand as he has had a preference of doing over the past 8 months. We're both unbelievably proud of the progress he's made recently in terms of his walking. The length of his stump and lack of knee makes using a prosthetic far more challenging than most amputees, as he has a straight leg to contend with. It has meant his walking progress has been much slower than that of a typical toddler; not quite snail pace, just Rory pace. But he's really turned a corner recently and is building up his confidence at walking without holding a hand or another aid. Well done Rory! 

However, as we know, progress never happens in a straight line. Just as we feel like we're getting somewhere an operation comes along and Rory is now legless for potentially 4 months - which is an incredibly long time when you're 2 and a half. I'll explain why...

Back in May last year Rory underwent reconstructive surgery on his leg to repair some of the skin graft which was 'tethering' to his muscle; meaning it was tight and not able to stretch as Rory's limb grows. His Plastics consultant, Miss T, operated on him last year to release some of the pressure and manoeuvre some of his tissue to give him a limb that was soft and stretchy enough to withstand the years of growth to come; no matter how big or small that growth may be. After that last operation we were advised that Miss T had managed to cover 75% of what we she wanted to by using his 'baby chub' as excess skin to stretch over the graft zone; there was still a patch of skin that required more work but she needed Rory to grow a little more first to fatten up and produce more skin for her to use. We therefore always knew that there was more surgery to come, to finish this last part. We got the call last Thursday, and were on the ward for 7:30am on Monday! Cue some last minute calls to our respective employers to sort the time off. We're both fortunate to have incredibly supportive bosses so there were no issues there.  

Surgery number 15 (!) and by now it's old hat. The one thing that made this time particularly different was that for the first time since we've been attending Sheffield Children's, none of the staff were wearing masks. We have never known a covid-free SCH. As we were greeted by the familiar warmth and fond hellos of ward staff who we'd known and loved for over two years, we were taken aback by the fact that we struggled to put faces to, well, eyes, and tried to hastily identify people by hair styles, heights, and voices. What made it more surprising was how much we'd filled in the blanks over the last few years, and created visions in our minds of what our nurses looked like. When faced with the reality, that sense of familiarity was partially lost and in some cases we were downright perplexed. There were a handful of nurses who we managed to pinpoint in an instant, but others we had to hold a conversation with and then deduce between us after they'd left, often checking with other nurses "was that so-and-so?! Oh it was - good!"

Rory was excited to see 'big Theo' again; the bear statue outside the hospital. He smiled and waved at his old friend, and seemed happy to be there. It was only when we entered our room on the ward that it became clear to us that he wasn't a baby anymore. His demeanor changed and he buried his face in my shoulder, his grip tightening as he clocked the Obs machine and the brightly coloured walls. He gave a little whimper in recognition, so I cuddled him back and distracted him with toys. I'm not sure exactly what he was remembering, but it wasn't a place he wanted to be. Fortunately the distraction worked; he soon cheered up and it wasn't long before he was ready to go down.

Fortunately Rory was on the morning list, so he was down for around 9:30 and was back with us for 1:30ish. Another benefit of the relaxed Covid restrictions meant that both Pete and I could join Rory in PACU (post-op recovery). It was so good to see him, and our hearts ached seeing his sleepy, confused little face looking for us. He was incredibly drowsy, but wanted Mummy and reached out for a cuddle as soon as we got there. He then murmured that he wanted to "go home", so we hugged him extra tightly and told him "soon", just as hopeful as he was. 

He really struggled to come around from the anaesthetic this time- strange after so many surgeries as a baby where he'd bounced back straight away. He took a big drink of water and almost straight away threw it back up. After a few more bouts of sickness (all water) he was given some anti sickness medication, which luckily worked. We'd packed enough clothes, snacks and toys for several days in hospital, but the nurses told us that provided he wasn't sick and could show that he was eating, drinking and filling his nappy, there was a chance we'd be able to go home that day. It was fantastic news; as much as SCH is a wonderful place, there's nothing like your own bed. For me in particular, sleeping on that hard sofa-bed with a nurse coming in to do Obs every hour makes for a restless night. I do appreciate however that we're very lucky to always be given our own room, rather than be on the communal ward and having to sleep in a chair amongst other patients and parents. I don't know I'd have managed that time after time. 

After plenty of snuggles with both Mummy and Daddy, followed by some episodes of Chuggington and slow sips of water, he was beginning to perk up. The only thing he didn't fancy was food - slightly worrying as time went by, considering he hadn't eaten since the evening before. We offered all his favourites- cake, gummy sweets, jam biscuits, but all were met with a firm shake of the head. 

Eventually tea time came around and a nurse brought pasta. Still no. However, Rory spotted what came with the pasta - two slices of garlic bread! Well, they certainly didn't last long, and in an instant Rory's appetite, and his smile, were back!

Garlic bread is life!

After the garlic bread he also polished off a pot of jelly, eating it himself with the spoon, and things were looking really positive for a same-day discharge. We still hadn't seen Miss T for a debrief, but she was stuck in surgery all day so instead we were given access to her Ops Notes (and caught up with her later) which concluded that in general it was a positive surgery; all went well, the full scar tissue had been successfully covered and his limb 'smoothed out'. We won't really know what that looks like in real terms until we go back next week for a dressing change and get to see beneath the bandages. By 6:30pm, we were in the car! Home time; what a relief!

In the short term, we've got to keep his weight off his stump as much as possible, more so over the next few days while he heals. Bearing in mind that Rory is a stubborn toddler with limited reasoning and plenty of energy, this is a big ask! I had Tuesday off work and tried to keep Rory on the sofa with plenty of TV, colouring, and snacks. Around mid afternoon he tried to make an escape and went speeding across the room, followed by a moan that his leg hurt. Suffice to say, he was on maximum dosage of paracetamol (every 4 hours) to ensure he was as pain free as possible. We had the odd whimper but nothing too extreme. Other than two wake-ups that first night, he's slept ok since; a couple of murmurs but refused paracetamol. So based on how he's been and what he's [finally] able to tell us we're fairly confident that he's not experiencing much more than an ache or stinging sensation. As I type this it's now Thursday evening, and today he's only had one dose of paracetamol with no grumbles. 

The longer term recovery is the part that will drag for us. The Plastics team don't want him to be cast for a new prosthetic leg until his wound has been given sufficient time to heal, which is 8 weeks. This means we can't do anything from a prosthetic point of view for two months. We also know that the build time from taking the cast of a stump to having a finished prosthetic ready to take away is around 8 weeks too. It can sometimes be sooner but all depends on how busy they are; 8 weeks is what we were originally told to use a guide. That's a total of 4 months before he can have the ability to walk again, let alone if he's managed to retain all the skill and progress he's made so far. We'll be asking our prosthetic centre, Blatchford, if there's anything they can do to expedite this timeline, but nothing is a guarantee. We knew this would be the situation, it's the frustrating reality of Rory's condition. 

15 bravery awards

 

So that's it; number 15 done, and hopefully the last for a few years now, depending on the growth that occurs in his limb. It's crazy to think that Rory is not yet 31 months old, so that's one surgery every two months for his entire life to date. To us, those Bravery Awards aren't just friendly bits of paper. I hope one day Rory understands how immensely strong he is, and how much strength he has inspired in Pete and I. 

 I'll write again in a few weeks to update on Rory's healing.

As a side note, we attended a 'parents evening' of sorts at Rory's nursery tonight. It was wonderful to hear how well he plays with the other children, and how not-a-thing his disability is to him or to them. He has one friend in particular who loves to help him put his leg on. It gives me so much reassurance for his future school life and childhood experiences.