Planning for Amputation

We are getting excited for Rory's first Christmas, as are the few family members who we will be able to share the day with (cue another Covid grumble). Even though Rory won't know what's going on, it's lovely to be able to start to pass on traditions from our own childhoods. Additionally we've watched Christmas films (well, Pete and I have whilst Rory mostly napped through them), we've eaten homemade treats (baked by my Nanny, not me, because I can't seem to find the time to bake with a clingy 5 month old) and wrapped plenty of gifts for our closest friends and family (I love wrapping!). Everything always seems to feel a little better in December. 

Nonetheless, medically it has been a trying few weeks. Writing this blog has always felt like a form of therapy for me; it's more than just logging events, it's being able to comprehend my own thoughts and feelings and help organise my mind. As such, I think it's important to be honest about the fact that I'm feeling somewhat deflated at the moment, in terms of Rory's condition. 

Skin Graft

In my last post I promised an update on his leg once the skin graft had healed and the dressings were off. Unfortunately we still aren't there. The last section of the graft to heal has now closed up absolutely fine, however a new, previously healed part has broken down. Where Rory has a crease in his leg that must have got a little sweaty, the skin graft there has got a bit 'festery' and gunky. It opened up to a piece of flesh about the size of a ten pence piece. The week prior we had been delighted that we would have a two week gap between hospital visits, because the leg was looking good and we'd been shown how to do the dressing changes ourselves. Although we were more than comfortable cleaning his wound and applying the creams and dressings, Pete and I knew that we needed to get this checked out. The last thing we wanted was for this to become infected and cause more problems. It was slimy and a little smelly, so we rang the ward and the next day Rory and I were heading down the motorway again whilst Pete was at work. They swabbed it, and luckily it wasn't infected; just needed cleaning and for us to continue with the dressings. We were right to get it checked out though. 

That was last week, and as I type this now it's looking so much better and is healing slowly. The gap is now probably the size of a five pence piece, and much less gunky. The honey dressing is definitely doing it's job- some of these creams are amazing! Top tip; get some honey in the house for next time you have an injury!

So whilst I consider this a setback, we aren't overly worried about his health, we just have extra trips to hospital, little scares, extra dressings, that remind us that we are still very much 'going through this'. The end is not in sight. 

Amputation Discussion

Earlier this week Pete took the day off work and the three of us travelled to Sheffield for an important discussion with Rory's orthopaedic consultant, Mr F, with regards to his amputation next year. It was a pretty detailed conversation about both the operation as well as his future care.

Rory is definitely going to need an above-knee prosthetic, not a below-knee one, which goes against what we had previously been expecting. His heel (which will eventually become roughly level with the knee on his other leg, due to limited growth) is going to become purely a stump, and he will use an artificial knee. We had previously hoped (as it had been suggested) that his ankle joint would be turned into a knee joint. Mr F has now decided that it will be better for Rory's quality of life to not have to go through the procedure of turning his ankle joint around. The reason being that if we went down that route, Rory would need repeat surgeries for the rest of his life in order to maintain that joint, as it will naturally try and turn itself back round (!). Whereas by removing it and allowing the stump to sit above knee level, he'll have the one procedure and that will be it. When both scenarios were laid out and discussed with us, we fully agreed that this was the best route, so we don't dispute the decision in the slightest. It doesn't really make too much difference because at the end of the day, an artificial leg is an artificial leg, but it would have been nice to salvage as many of his 'own' joints as possible. 

The procedure he's going to have is called a Symes Disarticulation, which will happen like this:

Photo credit: Abdulla Kamal, https://www.slideshare.net/Abdulla1986/amputations-of-extremity

In roughly five years' time, the difference in growth means that this stump will be at the correct height for Rory to have an artificial knee. 

In the meantime, until he's five years old and everything is aligned, the prosthetic that Rory will wear will mean he will walk with a straight leg; as his bones are fused straight, his good knee won't yet have caught up with his stump, and his prosthetic will be a foot with a small amount of leg. So when he walks he will look a little odd to anybody who doesn't know him, but that's just something that we will get used to.

Amputation Date

Timing has been a big thing for me. I am due to go back to work in June, and so I wanted to discuss the conditions for Rory's op taking place as soon as possible. For both emotional reasons as well as helping Rory make use of his limbs, I wanted to be off work with him so that I can help him stand on it, walk on it, teach him (and myself) how to use the prosthetic. I also don't want him in nursery until he's fully healed and both he and I are completely comfortable with his stump and prosthetic. Additionally, there's the other point that Pete and I want the op to happen sooner rather than later because then we can stop worrying about it and start living with it. It's like ripping a plaster off; just get it done so that you can move on. Pete is slightly more relaxed about having a set date than I am; he would actually rather have less notice, because he doesn't want the big countdown to a scary date. Instead, he feels it would be better planned last minute so that we are just focussed on enjoying his first year. 

Nonetheless, Mr F advised that the op will happen in line with Rory's development, which of course makes perfect sense. As soon as Rory is starting to pull himself up and trying to stand, that's when the op will be booked as that's when he will need his prosthetic in order to balance out the length of his legs. Unfortunately, the window for this happening is anywhere between April and September (9 and 14 months of age). Nothing can really be done to encourage this as, like all babies, he'll do it when he's ready and it's not really something that can be predicted. Our priority of course is him, and doing things the best way for him, but I did despair a little at the thought of this happening once I was back at work (about the 11 month mark).

So I must admit I came away from that conversation feeling a little disheartened, but it's my own fault for getting it into my head that we had some control over the date. Now that we don't and there is this chance of it being beyond June, I feel a little helpless and am struggling to plan next year. I know that I need to let go of the constant need for clarity and a schedule; because as we've seen so far, things often veer away from the plan. Pete does a very good job of helping to quell this anxiety; our different perspectives help us support each other in instances such as this. When I wrote the first draft of this blog post I referred extensively to the term "setbacks". Over the last day or so we've talked a lot about this and I'm now starting to see things like this as "hurdles"; framing these pieces of news as things to overcome to help us move forwards, not backwards steps. Plus I know that it's silly that I'm agonising over the timing more than the operation itself. Although saying that, the stress about the timing is potentially just a distraction so that I don't have to think about what's going to happen to his foot...?

I do feel apprehensive posting this now that I've typed it out. It's something that as you can probably see is genuinely worrying me, so sharing this with the world leaves me feeling very exposed. But that's the whole point of documenting our journey in this way, and I know I need to (and will) make peace with the ambiguity; we'll have a date eventually and I'm sure I'll be able to take the necessary time off work if need be and we'll get through it together, as a family, as we've done with everything else. 

For now we're going to put all of this aside, continue to change his dressings every two days until the graft is fully healed, and enjoy a magical Christmas. 

As I finish tweaking this post for the millionth time, Rory is currently blowing bubbles at me and laughing. His gorgeous smiles really do make all the negativity go away, and his happiness is completely infectious. So I'm pressing "publish" now and going to have some giggles with my boy. 

With love from our family to yours,

Merry Christmas.