Our Biggest Milestone Yet; the Amputation

Well, it's done! Rory is now officially an Amputee, joining a select club of some very special and inspirational people. 

I'm pleased to report that the operation went smoothly, and thankful that this event is now in the past. 

A-Day

I spent the days preceding the Thursday keeping myself distracted from the inevitable overthinking by packing, unpacking and repacking the many bags we were taking with us; a weeks' worth of clothes for Rory and I, toys and books for him, books for me, food and milk for the both of us, as well as the day to day essentials like all the nappies, bibs, etc. There was a lot to pack; a real eye opener for any future holidays! Gone are the days of me slinging an overnight bag over my shoulder...

The day itself started early; a 5am wake up to make sure we were in Sheffield by 7:30. Rory was first on the surgery list, so Pete took him down to theatre at 9:15 with the anaesthetist. Then came an incredibly long and agonising morning... it was gone lunchtime by the time our pager went off to let us know he was finished. By that point I'd already given up with my colouring book, with games on my phone, with mindlessly scrolling social media, and had resorted to pacing our room, trying to convince Pete that something must've happened and that it shouldn't be taking so long. When the pager finally buzzed I practically ran through the hospital to theatre. By the time I was let in and taken through to the recovery room I was nearly in tears, and as always the first thing I did was ask "is he ok?". I was over the moon to see him, although he was still fast asleep. Normally post-surgery he's drowsy but awake, but he'd had that much anaesthetic this time that he hadn't come around yet. Nonetheless all his stats were good, and reports were that the surgery had gone to plan. I held his hand, full of relief. 

Back on the ward shortly afterwards, a very sleepy Rory was starting to wake up. Normally he dislikes lying down; he always has to be sat up and involved in what's going on. So when he started fussing and straining we tentatively sat him upright and he reached straight out for a couple of nearby toys. Even though he could barely keep his eyes open, his cheeky spirit was evident. After a quick play and chatter he was back asleep for another couple of hours, but at least this time Pete and I could relax. Mr F came by to see us at tea time to tell us that the operation was a success and to check on Rory - all was well.

One sleepy lion

Recovery

As always, Rory was a little superstar. He came around from the anaesthetic pretty quickly, and showed no signs of pain. Although he was connected to the morphine, he only needed a push (dose) once the entire time. For the first 48 hours after surgery he was on a Nerve Block. This acted in a similar way to an epidural in that a tube fed directly into the end of his stump and numbed the local area (his leg). This was removed at 6am on Saturday, meaning that by 12pm (48 hours after surgery) its effects had worn off and we were carefully observing Rory's pain levels, as he was running on just paracetamol and ibuprofen. He was great, though; the medicine was doing the trick and he was happily playing and chatting away. 

Another tube that was fed into the stump was a drain. The reason for the drain is that the wound was expected to leak blood for the first 24 hours post-surgery. The drain collected this blood and fed it up, out and into a little bag which was strapped to Rory's waist. He did well and mostly ignored this bag, but on the Saturday I was playing with him and suddenly blood poured all over his legs! I panicked before I realised that he hadn't cut himself, he'd just yanked his little bag of blood off the tube and tipped it over his lap. Typical Rory; he loves fiddling with cables! Cue a full bandage change, which actually gave us the opportunity to see the stump for the first time. It wasn't as bad as we were expecting, but it was still a milestone moment that we hadn't seen coming so the shock of it was a little upsetting. Luckily our nurse, Katie, gave me a cuddle (Pete had his hands full keeping Rory's hands out of the blood!) while his surgeon mopped up and re-dressed his leg.

One of the best things about getting the nerve block and drain taken out was that it meant that he was no longer confined to his bed and I could cuddle with him on my sofa bed, or pop him on the floor and let him crawl around (yes; he's crawling now! It came out of nowhere! Yet again proving to us all that nothing is going to stop him). Prior to removing these tubes, it had been quite exhausting having to stand beside his cot to entertain him all day. We were both glad of the freedom. 

The next day, Sunday, Rory had shown no sign of pain, so we were discharged home with paracetamol and ibuprofen. 

Since being at home, we've managed to wean this pain relief down to one/two doses of paracetamol per day. I haven't actually ran this by his nurses yet but we know Rory, we know his pain cues, and he's not bothered by his leg in the slightest. He continues to crawl all over the house, throwing his leg around, knocking into things without a second glance. You'd never believe he'd just gone through major surgery. I'm so proud of him, and his strength inspires me every day to be a little bit braver. 

The Wednesday after surgery we went back to have Rory's bandages changed and the stump checked. There was always a risk of something called Necrosis setting in to the wound, but luckily the skin was showing no signs of this. It did need a little more healing to do though, so it was re-bandaged for another week. Nonetheless both Mr F and the other surgeon who attended theatre were both very pleased with it. 

Notice the aforementioned little bag of blood, just resting on his thigh!

This was our room. I was able to stay with Rory overnight; and we have an ongoing Covid-exemption from Mr F that lets Pete visit during the days, and also allows us both to be there for appointments.

Support

The support we've received has been overwhelming. We are so lucky to have such wonderful friends and family around us, and although we've thanked lots of people personally, I do want to reiterate how grateful (and undeserving!) we are of the many gifts, hospital care packages, cards and messages of support we have received over the last couple of weeks. It's amazing to know how many people support Rory and are following his journey, but who are also thinking about us as parents. We don't stop to consider our own mental states most of the time so it's lovely to know that others are. 

Likewise whilst in hospital, the care and warmth shown by Rory's medical team was such a big help too. We were glad to see some of our favourite nurses again; Liz, Katie, Emma and Alice, as well as meet some lovely new nurses, Fi and Roxie, who all adored Rory. I know I've said this before, but Ward 2 really does feel like a second home and we are always greeted like family when we go. The difference it makes to our mentality when we are there is paramount to us coping with the reasons for being there. 

Having so much support means more than I can ever truly express. Even though our emotions as Rory's parents are unique to us, we don't feel alone in the slightest. With the help of our network of family, friends, and the online amputee community that I'm beginning to connect with, we've been able to turn this into a positive experience whereby Rory's fantastic development and achievements are the focus, not his hurdles. And likewise if you're reading this now, thank you for taking an interest in Rory's story. 

One very lucky boy with his biggest lion yet, who he adores and I'm sure he's convinced it's real; a wonderful gift from the family of an old school friend - thank you Cunningham Clan x

Mementos 

In my last post I referred to the fact that we wanted to take the opportunity to find some way of preserving the memory of Rory's beautiful little foot. I'm so pleased that we went ahead with this. 

We visited Casting Memories, in Cleethorpes, to have this stunning cast made. It was delivered when we got home from Sheffield, and even though I was unsure about whether or not I could cope with looking at it, it's currently sitting pride of place above our fireplace until we decide where it's going to live. We chose the engraving to read "be brave" as it's a trait that Rory has shown in abundance over the last ten months. We take our bravery directly from him, and all of our strength is down to his own resilience. He teaches us to be brave every day, and if he ever has wobbles of his own in future I want him to remember what courage he has inside him. 

How beautiful is this...

In addition, the wonderful Rachel at the Paint Box in Cleethorpes reached out to me a few weeks ago and told me she wanted to do something for Rory. Pete was the one who took Rory in to the Paint Box one Saturday as I was taking the opportunity to have some me-time, so the first time I saw the end result in real life was when it was all finished. Using Rory's footprints, Rachel has painted the most beautiful lion plate! It's stunning, and such a wonderful memento.

We've previously had some Christmas baubles made at the Paint Box which came out perfectly, so I had total faith that I was going to love whatever Rachel made. I just know that we're going to be frequent visitors here as Rory grows up, and we are so appreciative of Rachel's incredible generosity.

Our stunning little lion...

One particular gift from my talented friend Niki is this beautiful crocheted lion, complete with his own amputated paw and little prosthetic! This is now Rory's second "amputee teddy", in addition to Winter the Dolphin. I'm very keen for him to grow up never feeling out of place, so having things like this around him are so important to me. Thank you again Niki, and the 3am Club girls.

Next Steps

We are back in Sheffield on Wednesday for Mr F's clinic. Again, he will take the bandages down and check how the stump is healing. The bandages will then either be changed or removed for good, depending on the condition of the wound. 

We are all looking forward to the coming weeks, whereby we will receive an appointment slot for prosthetics fittings. It's certainly an exhausting time, physically and mentally, but I'm glad that things are now moving quickly so that we don't get chance to stop and catch ourselves in a lull of sadness. The prosthetic is when the fun starts; so we can't wait to get cracking with that part of the journey - the Cullums are ready!