Burn Injuries

The next morning I wanted to get out of bed. This is a Sunday, about four days after it happened. And they said "Really?" And I said, "Come on, let's go," you know… [Inaudible] And then, I think that helped my recovery was also I had this positive mental attitude that as lovely as it was being in there being fed and looked after, I really wanted to go home. And because it happened before Christmas, I had a goal in mind – I wanted to be home for Christmas.

I said to her, I said "Right, you can take me out the ward, and I’m going to start walking up some stairs." And she goes, "You're not ready for that." And I said, "Let's try it." So, I always, sort of, set myself goals. I wanted to do things, but I said the healthcare professionals, without them, I would never been able to achieve my goals.

Did you think that goal-setting was helpful?

Yes.  Oh, absolutely, yeah. I do remember it's probably the Monday, and I said to my nurse, "What stages have I got to go through for my recovery?" She said about the dietitian, speech and language because I had my vocal cords are still damaged but, so I had to see speech and language therapist, and then there was the physio and all these people. And each one of them I said exactly the same “What do I have to do to get to the next stage?" You know, "This is my goal. I want to be out for Christmas. What do I have to, what I have to do – not what you have to – I have to do.”

I think it was a big relief when I first came home. So, I have two older brothers, so my family had been having to juggle with having those two and having me. I was in a hospital that was a little bit further away from my house than, I guess, ideal because I was too small to go to the closest hospital. And so, it was amazing when I got to come back and see my brothers, my family. And then I had to sort of go back into school, which was… I was very lucky that my school was lovely, and they were really understanding.

I’d say five days-ish, so not that long. I think it was once, like, they slowly started taking the bandages off, you know, and because I was 21 or -2, the skin heals quite quickly, and it sort of reached a point where I sort of wanted to go home and try and do it from home as soon as it was an option. Just because it was a bit uncomfortable in the hospital and, just, I don’t know, just sort of stuck in a room with a tiny TV, not being able to do much and, yeah, it wasn’t too long in the hospital.

I think it was a bit of a discussion both ways, they just, I think they were asking ‘You can stay if you want but if you want to you can go home if you feel you’re ready.’ It was a bit like that, and I felt, I sort of, well, needed to go back.

Chris: Actually, I have to say, it was far easier to do it remotely like that, than it was to spend, you know… It was a question of getting William into the right place, we took his pictures, I e-mailed them down to the burns-, to the scar clinic, the doctor reviewed them, we had a conversation the following day and then we talked to him six months later. It was, compared to having to take three hours out of your, you know, three hours of driving, an hour at the hospital, the extra hour to go and get William, to take him to school, all the admin of getting him out of school – it was actually far easier.

Amy: And they were very quick, because we were seeing him then every three months at the time and they were very quick to put their virtual stuff in place.

Chris: Yeah.

Amy: I think they just changed the appointment to a virtual one. So, it must have been March, April-time and I think maybe they said “Oh, we’ll see you, we’ll maybe see you in person next”. This was before anybody knew how long it was all going to go on for, our "three-week lockdown", and we commented that actually it was really, it was a lot easier, and they would facilitate that anyway, virtually, they said. So, it was kind of good. It was harder to remember appointments.

Chris: So yeah, that was the only thing is, remembering appointments rather than having to take the day off to go and get it. And the only other thing to say about that is that I do photography as one of my hobbies, so I have kit to do it. Whereas, if you didn’t, you’re taking… And I think sending it down to the scar clinic, and they were happy with what I’d sent them and it wasn’t then “Oh, can you take this or can you take that, can we have that shot, can we have that shot?” I went “Ok, I’ve seen you do it, I can do it myself, I can send you the photographs, tell me what else you need, and we’ll make it happen.”

Amy: And because of Covid, William was at home as well, otherwise we’d have been taking him out of school to have a 10 minute phone conversation. So, it kind of worked because everyone was home together.

So, they told me that as soon as I get back home, I had to contact my own surgery, and, with a view to having it redressed. So, which I did, but unfortunately, the nurse was off sick, so it couldn't be redressed when it should have been. And I phoned back the next day and she was still off sick. And so, I said to them, well, “I’m just going to have to go to the hospital, and have it redressed because it can't wait any longer”. However, they sent out a nurse.  You know, one of these, the nurses that just comes out, and she dressed it, but by that time, an infection had set in. So, it got quite bad after that, and so that was on the Tuesday. The burn had happened on the Sunday, and that was the Tuesday.  And by this Thursday, when I did get to see a nurse in the surgery, I was feeling quite ill. My temperature had gone up and things like that. So, they redressed it and told me to come back on Friday. And they were going to leave it over the weekend, but when they saw it on the Friday, they saw, no, this is this is getting worse and worse, it was all foaming and I think this time, I felt really quite ill, so they said I had to go to the hospital immediately. So, I got to the hospital, and I got through to the, you know, the room where they eventually take you, and they were quite horrified with it. By that time, it was down my arm and up my arm, and it was a bit of a mess.

When the burns nurses would come over and look at it and treat it and rebandage it with, I think it’s special silver-backed gauze, I think it was, and it was quite, this is probably the wrong thing to say, but it was quite nice to watch the size of the dressing reduce, and the amount of, kind of, what’s the right word here? I want to say, the amount of faffing, but it’s not faffing, because that’s not the right word, but the amount of time and precision and time that it took for them to undress it, clean it, dry it, put cream on it, bandage back on, wrap it around him and tie it off, dress him, you know, as that gradually reduced to the point where, actually, you know “Put this plaster on, leave this plaster on we’ll take it off in a week when we see you again” it kind of, it reduced the impact I think because it felt a bit more, you know, it was healing and he was going to be ok.

So, I think kind of initially in the first stages when it was, someone would have to come to our house to dress it and undress it and, you know, treat it for us and, not invade your home but, kind of, in my head, I’m thinking “What is she thinking? What is she …” because she obviously knows the case notes, she should have read the notes the doctor will have made, she’ll know the story, you know “What’s she thinking of me? Is she judging me when she’s here? Is it going to be a case of should I be somewhere else? Am I going to get some difficult questions?”. But as that kind of faded away and then we kind of ended up going to the hospital for him to have his treatments, I think it started to feel a bit more relaxed now and just kind of routine, you know, like you would if your child had stitches, I guess. You know, you go for the initial stitching and then you go for a follow-up to make sure the stitches have dissolved, and it’s knitted together and then you might go for another follow-up later on. It kind of felt a bit more routine then. And because he’s actually going tomorrow it’ll be interesting to see what the doctors say about it tomorrow. But it’s kind of nice that the severity of it seems to have kind of faded away a little bit, because they’ve been a little bit, you know, the attention that he’s had from the NHS has reduced, which means that it’s obviously a positive sign, I think.

Chris: Yeah, so he wasn’t in that long really, he was in the three nights, out on the Monday. So, he did it on the Friday, he was out on the Monday… [Inaudible] …With, bandaged from his waist down really. Both legs and both feet and we were having to make arrangements for, uh, moving his bed so that he could actually get into bed. We were having to rearrange furniture so we could get him somewhere to sleep.

Amy: He has a cabin bed so he wouldn’t, he couldn’t climb the steps to it. So, there was a lot of practicalities around that.

Chris: Yeah, that was what I was just about to say was actually, the one thing that you don’t consider is how much more time any of this stuff takes.  So, if you’re thinking 'Ok we need to go out, it takes me 10 minutes.' No, it doesn’t, it takes half an hour because now you’re having to move somebody around the house who has limited mobility because of his bandages, because of his injuries and then 'Oh, how do we get him into the car?' It was actually a moment of debate when we took him home when he was discharged: how do we get him into the car so we could bring him home, because he can’t bend.

Do you think that more consideration should have been given to practical aftercare?

Amy: I think probably more raising that these might potentially be issues. Because, obviously, you’re trying to think in the hospital, and we’d obviously worked out that his bed would be an issue and we’d taken steps to do that. But actually, you kind of need to go through the logistics of everything. Like, all the normal stuff, so the going to the toilet and things and I mean, it would have been, fortunately, we have a toilet upstairs and a toilet downstairs – we’re very lucky – but um, some places you wouldn’t have that. So, just the logistics of if you were, if we only had a downstairs loo, just getting down to the downstairs loo to go to the loo in the night, or something.

And when they said that's it, you don't need to come back and they took the final dressing off, I was terrified. And I said “Oh, I don't have a dressing on my arm” because I was so used to it at this point, you know, showering with this thing on your arm all that kind of thing. You know, this big like plastic thing on your arm, oh my goodness, you learn all sorts of ways to do your hair.

How did you feel when like the first few days after the last dressing was removed?

Well, funnily enough I didn't have much time to think about it because my son was getting married, so we immediately went into the wedding thing. So, I didn't, other than don't anybody touch my arm, don't anybody come near my arm, you know, just very protective of the arm, and I really didn't have much time to think of anything other than that, to be honest. So, it was a strange time.

But of a normal month it’s, she would have regular physiotherapy, so she’s got quite a lot of burns over joints, which obviously affect movement, so she has to have them regularly kind of her range of movement measured. She’s quite a lot of OT (occupational therapy) input for the scar management at varying times depending on the surgery but also for her function. So, she’s had some handwriting assessments at the minute because she’d been struggling a little bit at school, so they’ve done some work with her, they’ve done some work with her, how to use knife and fork more effectively. So, she’s had quite a lot of appointments for that. She also is seen quite regularly with the ophthalmology department because she was burnt on both her eyelids. Her left eye, in particular, is particularly troublesome, her eyes don’t close properly so she ends up with quite a lot of infections, and she is seen very regularly with dermatology because she was one of the unfortunate ones that got eczema on top of her scar tissue, which isn’t uncommon, but she was just unfortunate that she’s got, it's quite troublesome for her.