I think it’s worrying because I know what’s going to happen. It sounds bad because you know I know that if he gets it he’s going to be poorly so I get, I am quite prepared now, if, when he starts even getting a sniffle or anything I’ll pack both our bags ready just in case.

So I get ready, and then I will say to the older one you know, we might be going into hospital you know but it’s alright, and so prepare him and talk to him and say, You know you can come and visit with Daddy, and it will be absolutely fine, and don’t worry about it. We might not be going but I’m just letting you know. So I’ll sort of prepare him for it and actually we bought a book, it was a Topsy and Tim book, so really old about Topsy and Tim going to hospital, one of those, one of the children was in hospital and [son’s name] loves that book and they both like to look at that.

How have you used the book with them?

Just by reading it and then saying, Oh you know oh that’s a bit like when you go into hospital isn’t it? And you know, What do you like about hospital? and Oh that’s good, they’re playing with toys and you know, do you do drawing at hospital? And things like that, so he’s like, Yes I do Mummy. I love it. He always goes on about how much he loves it when we’re there so. You just think at the time he doesn’t seem like you’re loving it, but he calls it The doctors with the beds, he won’t call it hospital.

Well because we run our own business, so and my side of it is more sort of it’s, to cut a long story short I find properties and investments so I can do that as and when you know but if I have a couple of days where I’m not doing that it’s not all going to come crashing down around us so luckily I can sort of jig things around.

So do you think working for yourself, having your own business, is that with your partner? With your husband?

Yes, yeah.

Do you think it’s easier or harder to manage this sort of life episodes, like completely like you know difficulties in life,

Easier because we can be more flexible. You know certain things have to be done at the right time every month so it can sometimes be tough on my husband if something comes, you know if he gets poorly around this time when he’s got deadlines to meet, certain documents have to be filled in and sent in at certain times but most, you know it is, we are lucky that we can work from home, fit around the children so, which is why we’ve chosen you know this business and what we do, so.

Oh really.

Yeah.

Oh so it’s a deliberate choice

It’s a lifestyle business so that we can do it in, when we need to do it and work around the children. So

Oh okay.

luckily you know that does work quite well.

But that was already before he was ill?

Yes.

What about financial impact? Does it have a financial implication if you have to take time off or is it not to that extent?

Not really, again for the same reasons and that the way it’s working, we’re not sort of paid hourly or anything like that,

Yeah.

It’s just,

Yeah.

It’s, and on-going sort of thing so,

You don’t have to close shop or

No and we’ve got sort of a lettings manager and people that work for us, they just go and do their, the actual sort of the practical hands on side of it, we’ve got the people that do that for us and so they don’t need us to be there.

And you said that the nurses are brilliant, and what, what do they do that makes them brilliant?

They sort of say the checks are really, really regular and they’ll explain, in fact if you’ve got any questions they’d explain everything. The things like little things even, like obviously it’s hard to go out and get anything to eat or anything like that because you’re with him the whole time, although there is a parents room, there’s nothing in it. So sometimes they’ll say, Oh, you know we’ll watch him for half an hour, you go up and get something to eat, or something like that. So they’ll go over and above their duties to help you out in that way. But they’re always willing to explain everything and if he’s not comfortable with something they’ll change it. For example like when they put the Oxy thing, measure, you know that on whatever it’s called

Oximetry

oh he had a real big thing at one point; they used to always put it on his toe. He didn’t like it on his toe he suddenly decided so they, they would move it onto his thumb. And then if he didn’t like it on his thumb they’d, and they weren’t bothered, they weren’t you know really cross about having to keep moving it around, they were quite happy to whenever he clicked his fingers and said, I don’t want it on there now. I want it moving, they’ll move it, you know and they’ll sort of pander to him. So they’re really good in that way.

Yes.

And they understood about him not liking the nebuliser at first

Yes.

so they’ve let me hold him in my lap and do it and you know they make it as comfortable as possible for the children I think.

I just think you’ve got to be careful yeah that they don’t build up a complete resistance to it. And it did worry me when they put him on that six month course, but they said it was only once a day, and a low dose I think so there was concern about it and I did say to the consultant at that time, You know is this not a risk then that you’re going to, but he did say Well if he builds up a resistance to this one then there are other ones. But then it did stop the ear infections so it did work.

And that was sort of a preventative for the ear infection?

Yeah.

Yes. Were you happy with his explanation with, did you, were you happy to go with it at the time?

Yeah because I think at that time we just wanted his ears to get better.

Exactly.

Because they were just permanently disgusting and uncomfortable and it wasn’t very nice for him. So I thought well it may even build up resistance but it’s going to make him feel better, I mean he could still be having it now, we hadn’t of done that, so.

Well we’ve just, he has the flu jab because we’re just told that with his condition obviously it can, if he did get the flu then it could cause a lot more respiratory distress than with anybody else, so

And how long has he been having that?

Two years or three years, I can’t remember.

Yes. Something like that.

So yeah, something like that yeah.

How do you feel about that the flu jab?

Yes I like him to have it. I just think you know it’s the lesser of two evils. You know if he has that then at least we haven’t got to worry, because I do, in the winter he seems to get a lot of colds and things like that, which often make him sort of need his inhaler and stuff so I think if he hadn’t got the flu jab and he did get flu he’s probably get really poorly. So I don’t want to take that risk.

So I said to my husband rather than getting up, I said just get into bed and cuddle him because I want him not to be too traumatised, but he was, apparently he shook from head to toe all night and cried for the rest of the night so it really had a big impact, you know.

Has he not seen this sort of thing happen before? Was that the first time?

He’d seen him in hospital, he’s seen, cos normally it builds up, it will come from say when he’s got a cold or a flu like illness, so he will start off being poorly with a runny nose and temperature and then we just think Oh no, you know that he’s going to start coughing tomorrow. And then he’ll start doing that and then his heart rate is going and then he’s all sweaty and the colours going from him and you think, Oh okay it’s about time you take him in now. So he’s seen it build up like that. But he’s never before woken up in the middle of the night, out of the blue with no signs before, so that was why it was I think scary for everybody.

Yes, yeah. And, but you said the ambulance was very quick.

They were amazing. Fabulous. But he still gets, he’s still really, he doesn’t like, he talks a lot about, When he’s been in hospital Mummy. I really miss my brother. And things like that. So he does talk about it a lot and I think it does have an impact. He, he has made his own little picture diary at home, not long ago I was looking through and he’d drawn a picture of his brother in hospital with a, he’d put a little mobile above his bed and written, My brother is in hospital and I missed him sort of underneath it. So he does, yeah it does affect him.

And do you talk about it with him at home?

Yes, yeah.

Or with the whole family?

Yeah we’ve explained to him sort of why, what you know, what it is and why he needs to have his inhalers, and why sometimes he has to go to hospital, but that’s the best thing for him and that you know they’re just looking after him and not to be frightened of the, especially the paramedics that night. I think that’s going to be engraved on his memory so you know you explain that they’re there to help him, they’re not scary people at all, they’re there to make it better.

It does make you wonder whether that might be something that has had this impact on the older one’s sort of tantrums and things lately, which are completely out of character. Whether that comes from fear.

Something else going on?

Yeah.

And worry, it could be couldn’t it? Because

It could be.

That, the week after that incident the older one wet his bed a couple of times and he’s never ever, ever been one to do that.

Probably just with him grizzling and moaning and being a bit stroppy. Especially now at this age probably thinking hang on a minute, why’s he like that, he seems really tired and grumpy and it’s out of character, and then it makes me think is he going to get poorly? And then he’ll probably start to get a temperature and feel hot. And then runny nose after that, and you know if it’s, if it’s just a, a clear runny nose then that’s just like typical for him but if it’s horrible green cold type nose and a temperature then you think, Oh you know. And then he’ll be really, really floppy and that’s when he will start coughing and once he starts coughing then we know usually that’s going to lead to trouble.

Right.

So it’s mainly those things and saying that he hurts, he says, sometimes he will say he hurt, It hurts all over Mummy, so I think with flu you get achy don’t you really achy, and he does actually go really shivery, that’s the other thing. Goose pimply you know and saying it’s cold, so when he’s actually feeling really hot and then saying he’s hot when, when you know sort of hot and cold flushes and really, really shivery skin.

And, and in what sort of period of time would this develop?

Probably if you say if he’s grizzly one evening, then the next morning he’ll probably wake up with the runny nose and by that evening then he’ll have the full lot probably.

When he was actually a baby, probably about, from about six months old he constantly had ear infections first of all. No sign of asthma but permanent sort of green thick gunge coming out of his ears. So, and they kept putting him on antibiotics which didn’t really help that much. So he was put under an ENT consultant who put him on a low dose six month course of antibiotics.

But at the time it followed sort of a flu-like illness, really bad cold, really bad fever, crying, you could tell he was uncomfortable. But then we noticed the recessing in the ribs and struggling to get his breath in, coughing and trying to, really struggling. So that was the first time he got admitted.

At, at that time they said they were, they couldn’t say what it was, they thought it was some kind of viral induced wheeze brought on by the flu, and then he got admitted again, eight weeks later I think it was, with the same thing. So again they were saying viral induced wheeze which we heard several times over that sort of year.

So the cycle kept continuing, either every time he got a cold or flu like illness, which he seemed to get more often than other children, he would then have an episode, or every eight weeks as well, even if he wasn’t poorly. So you know that would happen anyway.

Right.

Which was really odd.

So yes it does seem to be that it’s, it’s, it follows a cycle but then if he gets a cold or flu like illness then that, there’s no doubt that he will also then flare up as well.

Every time?

Yeah.

I think our open hours, sorry not open hours, out of hours surgery, is not even in our town, so I think..

Oh okay.

that really makes me mad because we’ve got a really huge [um] surgery, loads of facilities, there are loads of rooms, I don’t know why they don’t offer an out of hours service because that is such a nuisance having to put him in, especially if it’s at night time, put him, get him dressed, put him in the car, wrap him in blankets and drive 25 minutes to the out of hours when there’s a surgery at the bottom of the street. You know why is that not offering that service? I think that’s really bad.

So the out of hours would make a difference?

Yes. And sometimes they move it round so sometimes that, even the one that we used to go to isn’t open, it’ll be another one in another town so whatever.

So alright.

So you don’t know which one you’re going to.

This one I came to once and I had no idea who it was, so of course not only are you panicking because you’re thinking I don’t’ know where I’m going, how long it’s going to take, you know and everything, and that’s, but you don’t want to call an ambulance because you can tell whether or how serious it is, obviously I have called an ambulance before but when it’s that time and you think well he’s not bad enough for that but I really don’t know where I’m going, it’s not good. I think you should have one in your own town. I can’t understand why there isn’t like that service. And why doctors never come out to you anymore. They don’t come out anymore, do they? Well I don’t know, in this area around here they don’t. They do not come out.

Would that be something you’d

If they could come to your house with a nebuliser

Yeah

then that would be great.