Amy: So, we could ring up and… So, we got discharged without pain relief, which with hindsight, I should have requested it, I think, down there, but they said… We were instructed to give him ibuprofen and paracetamol alternated, or something. So, we had a chart set up and it was fine, but we knew, we could tell… So, the first night where he cried with pain during the night, it was like, ‘We need some better painkillers', because he’s crying with pain, it kept the other two awake and they were really upset about it and there was… and actually, watching him cry when there was nothing more than you can give him was really hard. And then, when he was still in so much pain a couple of days later and we went back for the dressing change, they gave him… we got prescribed morphine to take home, Oramorph, so that we could give him that pain relief if he needed it, which kind of meant he could settle down.

Yeah, the pain definitely wasn't nice and the whole, although it was necessary, the whole not having painkillers for a while, and having to leave it out to oxygenate, that was the worst bit. And also watching the nurse wipe away the blister… [laughs] that was, oh – I can appreciate why she didn't give me any warning, if she had told me – but it was… oh, I just remember seeing it like “Oh my God, I can't believe that just happened, that is my red, raw wrist!”.

So, the time it probably kicked in was probably when they took me off the painkillers, took the, let the oxygen get to it, and I could feel the burn all around the wrist, but not in, on the wrist and they're sort of poking and prodding this like blister sort of thing. And that's when I sort of thought “Right, this is definitely a lot more serious than I first expected”. And I think that's sort of the time. And then afterwards, you know, was put on like codeine. I’m sort of thinking “Right, there's definitely…” – and being referred to a specialist, you know – I just thought “there's definitely more to this than I first imagined. It’s not just a case of 'run it under some cold water and a cold compress'. This is quite serious”.

The intense scream that I remember, it was one morning, was related to… So, I think while I was lying in bed I was dosed up with painkillers, all sorts of things, tablets, stuff going in, you know, in the arm, a constant supply of something, would that have been in my nose? – I don’t know – something. So, not too much pain. It was the first time I stood up that I screamed, screamed the loudest I’d ever screamed.

And I was on a ward, and I remember other people on that burn’s ward as well, being in a far worse condition than I was and, you know, almost thinking to myself “I’m quite lucky really.” But being in intense pain, I do remember the pain at that point, it was absolutely hard, I remember screaming the loudest I’ve ever screamed and feeling guilty that I’d just woken up all these other patients on the ward. But that was happening quite a lot there I think, because there is a lot of pain involved.

But the one thing that’s stuck with me about my current surgeon in the adult service, is probably when he was telling me about the different lasers and I said to him, I said, “Please be honest, but how much does it hurt?”. And he was like, “I can tell you, because I’ve tried every one”. He was like “It doesn’t do any damage to me, do you know what I mean, to have like a-“ he was like “Obviously, I don’t have 30% of my body lasered, I had a tiny little, like you know, 10 second one” but he was like “Oh, I’ve tried every one. This one feels like this, this one feels like an elastic band flicking you, this one hurts”. And actually I was like that is what we need more of, and even my mum was like “Oh, can you just do a tiny patch on my hand so I can at least try and imagine what she’s thinking about or what’s going on?” And I guess that’s one way of parents helping their child cope, is learning to understand a little bit more what they’re feeling and what will be going on for them. And even doing it in front of the child, you know, if it hurts and you cry, actually at least the child’s seen it and gone “Ok, this might not be nice but if mum cries then I’m definitely allowed to cry” you know? Giving that and not sugar-coating it because actually having scars is not always easy and a lot of the treatments are painful, they are long or they are frustrating or, you know, and actually sometimes it’s ok to just be like “Yeah, it’s going to hurt, it’s crap actually but, you know, it will be ok eventually”.

It took a few minutes for it to sink in that actually, where was I, so it was almost like going from nothing to sort of like suddenly realising that it wasn't where I thought I should have been. If that seems to make sense. The nurse was lovely. You know she took, she was with me for quite some time explaining, you know, where I was and what was going on, so I’m very grateful for that.

I couldn't, I didn't believe her, because I had no pain. It's just 'really?', it's 'but how can I–' … I distinctly remember telling her that, “But I can't have this injury that you're telling me about because I have, I don't have any pain”. And then she told me that the fact that because my burns were so deep, they had taken, like, the nerve endings. So, she said that's why you don't feel anything. I knew I had bandages in my face, so. But of course, I had my hands up in these hoist things because my hands were bad, and she explained to me that I had, like, dressings on my face. It was keeping me, to keep the skin moist.

Immediately after arriving in the hospital, we were told that she couldn’t be treated there and were we told to try and get her out of the country as quick as possible. It took five days for her to be flown to the UK. On day six we came to where we currently live and she’d been treated there ever since. She was in a medically induced coma from the initial injury, and she remained in a coma for about eight/nine weeks, I believe, and then spent about another three months in the high dependency burns centre in the hospital, and she’s been treated there ever since.

At that point, in the early days, I was glad for someone just to take her and do something and I knew, well, I felt like she was safe, in a coma, with somebody doing whatever they needed to do to her. My husband probably would have asked a lot more questions than I did, I was just happy that she was somewhere that was being treated. So, he could probably give you more of the, you know, kind of in-depth information of what happened. But I was just happy that somebody was taking care of her, that’s all I wanted. So, I don’t really remember too much about the, you know, I remember her coming and going and coming and going and her being very, very ill but I don’t really remember much in between.

Scar contracture is a specific term relating to the tightness of the skin relating to a scar. So, any time a burn wound heals, if it heals relatively quickly and the skin gets back to its normal texture then that’s great, but sometimes a burn may be very deep and may take a long time to heal, and that leads to scar formation and scars tend to be thicker, redder, firmer, than normal skin. They often become tighter, so, they actually become smaller, and especially across joints, such as the elbow or the hand or around the legs, that tightness can restrict movement or make the tissues feel very, very tight. So, a scar contracture is that tight feeling, often patients who have scar contracture need to have scar therapies and there are lots of ways of managing that scar, but in some people to release that tightness they need to have surgery that either moves tissue around or brings more tissue in to make that tightness go away and allow movement to occur normally.

I had the free flap put over the bottom of my stump because right from my accident in 2002, I’ve always had like a big ulcer at the bottom of my stump, and it just would never heal. And then it was going on for years and years and then I remember having an appointment with my doctor and it was my consultant who looked after me straight from 2002, but he was retiring. He said to me “I’m just letting you know that I’m retiring but I’m going to pass you over to another surgeon who’s really good” and all that. And he has, he’s been another amazing, kind surgeon, or consultant, and has really helped me and it’s like just like the free flap surgery that I had, I think that was an 18-hour operation, but it’s done so much for me, you know. Even, again, it’s not like made it any easier or any less painful walking or anything, but it’s just I’m not always worrying about infections and things like that.

I had like a large ulcer on the bottom of my stump and then, uh, my consultant took a piece of skin from the top of my left thigh – it was quite a long piece – and then he just like wrapped that over the bottom of my stump, around the ulcer, and it’s been amazing since, over it and, touch wood, it stays that way.

I always have to wear extra socks in my shoes and especially in the summer, it just gets really hot and irritable, or when my feet are really cold, they go numb so I can’t actually feel them, or they just get really sore and they often rubbed on my, like, boots and the skin would always deteriorate. So, what my surgeons suggested as a temporary fix instead of like a surgery and a skin graft on my foot, and more time out, he was like “Oh why don’t you just have a fat transplant, so it’s basically lipo”. And I was like “Sold!” and he said he’ll take the fat from my tummy area and inject it into my foot, and it should last a few months, might get about a year out of it. I was like “Yeah, let’s give it a go, see how it goes, what’s the worst that can happen? I’ve had a lot worse surgeries.” So, I went in for that and then also my face pulled quite a lot because I didn’t have face surgery since I was little, and so before lockdown I had, sounds really awful, it’s called flap surgery. I was like “Very creative!” So, they literally like, where the skin on my neck was tight, it was pulling down on my eye so I couldn’t actually shut my eyes and sleep and I was always dribbling. I still dribble and I still sleep with my eyes open because of the skin graft on my face, but not as bad now, I can blink and my eyes actually shut, and I don’t dribble my food when I eat it. So, I had that surgery and that took a while to heal.

She has spoken to a psychologist very recently about, she’s had – only on her last surgery – had massive anxiety and fear over dying, which she’s never had before. She’s had approximately… in the seventies operations to date and it was only in the most recent one that she was really scared and thought she was going to die and, you know, stuff that had never, kind of, come out before.

I suppose when you’ve got a child telling you, you know, kind of, in the days leading up to the surgery, “Mummy I think I’m going to die. I think I’m not going to wake up” and “this might be the last time I see you” and, it puts, it’s kind of, what I’m thinking, I suppose… So, it makes my fears actually become more realistic because you do think that every time that your child is going down for a procedure, you know 'am I doing the right thing? Does the benefit outweigh the negatives that come with it? The recovery time… What if she does die? What if she goes down for this fairly small procedure in the grand scheme of things that gives her a tiny bit more movement in her arm but isn’t going to save her life?' You do second-question yourself, you go “should I do this, should I not do it? Should I…?” you know, "so what if she can’t move her arm, at least she’s still alive". I think, when you’ve got a child – or anybody – who needs surgery to save their life, it’s very, very different to surgery just to improve things.

I’ve got a lot of memories on the operations. Going back to my initial hospital stage, and so it was quite blurry, but it was very persistent. I think for a period of at least three weeks I would have been in and out of theatre every day, so that’s a process of going under anaesthetic, which is not great, always quite horrible, them doing what they need to do and then spending the day coming around from the anaesthetic and then getting used to, perhaps, that change in pain from whatever has happened, and then going back through that process in the morning. So, as well as being young that probably constitutes to why I don’t have much memory from that stage.

Yes, there was a lot of physiotherapy, and so I had to learn to walk again, so because I’d been in bed for three months. You just suddenly get to a day where they're like okay we think, you know, we're going to get you on your feet, and that, I think, I still remember that day really clearly because it's like, it kind of moves around because you've still got your dressings on and stuff, and they kind of stand you up. But you've lost all, you think, from a child's perspective, it's like “Great, I’m just going to get up and I’m going to walk” and I mean, I was still bandaged as well, so the weight of the legs, it wasn't actually possible to walk. It was just, I think it's one step and then back on the bed. But obviously, that's all the challenges that come with that as well, so the pain of actually learning how to walk again. Physiotherapy came a little bit later so that was I think when the dressings were fully off again. And I remember not liking the physiotherapy because it's, yeah, it wasn't particularly nice.