Well, it’s the biggest ruiner of plans isn’t it, children’s illness and not serious, not life-threatening. Children’s illnesses are just ruin your plans all the time. I think, I don’t know how and I’ve said this regularly, I don’t know how, with three asthmatic children, I would manage a job at this stage in my life. I just, you know, the advantage of just one of us being in employment means that if he needs to sleep, he can go and sleep in another room and go to work and I’ll be up with the children. And then if I’m unwell, he can take that role but, at this stage, I think it would be extremely difficult and I would end up sending them to school when they shouldn’t be at school and now I can, I’ve got the freedom of keeping them off, which hopefully, prevents them going downhill with a particular virus and it takes the pressure off, certainly being at home.

Tell me when Amy was younger, how was, for you and for her dealing with a flu like illness, with influenza?

It was quite hard, because obviously she’s not an only child. I’ve got two other children, and one of her sisters is only 15 months older than her. So if Amy was ill it would be a rally round to see who could have my other daughter and my son and nine times out of ten we’d have to phone the hospital and say, Amy’s burning up, what do we need to do? And cos she was a direct admission we’d literally take her straight to the A&E where she’d see the paediatric doctors instead of the normal A&E doctors. So it was just a lot more running around.

So she, presumably she had to stay in hospital for the whole period.

Yeah.

Five days.

Yeah, that was a long time ago. That was when she was quite small. She hasn’t had anything like that for a good few years now.

Did you stay with, were you able to stay in hospital with her?

I didn’t stay in, purely because I had to get home for the other children and my husband goes to work early. So, I used to sort of leave there at eleven o’clock at night and then go back in the morning. But I think because Amy spent the majority of her life in hospital at the beginning, anyway, it didn’t matter that I wasn’t there.

She was used to it?

Yeah.

For you as a parent, how was it leaving her in hospital and having to come home and were you worried, anxious?

Ooh, I think at the beginning it was really hard, purely because obviously she spent the first four months of her life in hospital anyway. And I couldn’t stay there anyway. So I think it was just something, as a family we all got used to. My other children had to be considered. So, Amy just had to stay in hospital on her own. Obviously, I’d phone in the evenings, if I wasn’t there. But nine times out of ten I’d literally, I’d wait till she’d fall asleep before I’d come home and then I’d sort the other two out in the morning for school, I’d get back to the hospital.

Was his sleep affected when he has the flu-like?

Yes. Yeah. Because, because he can’t – because it’s all stuffy, he can’t breathe. So, and especially with the tonsillitis, his throat’s sore. So if he’s only breathing through his mouth, he’s – then that gets dry. So yeah, we pretty much don’t really sleep much when he’s poorly. He’s not the best of sleepers anyway. He’s, he’s, he wakes three, four times in the night, and we have to resettle him, so at the best of times. But that’s purely because he just wakes. But yeah, when he’s – when he has poorly, when he has flu-like symptoms, he’s, his sleep is pretty much – which doesn’t help with the recovery, of course. Which makes, takes it – makes it much longer, because he’s tireder. So then the daily routine goes out the window, sort of thing, because he might sleep for a couple of hours during the day, then wake up, then another couple of hours. So then because he’s slept during the day he doesn’t sleep at night.

Those occasions in which you have had to stay in hospital with Arthur, how you have managed?

Purely, I – we ship – we haven’t had one while we’ve had [daughter], yet. Because this was last year. So we had [younger son]. But my parents – both semi-retired as well, which is quite cool, and very lucky – so we’ve kind of shipped [younger son], and they’ve had [younger son]. And then I’ve just solely been able to concentrate on Arthur I’m lucky enough at the moment that I don’t work. So I haven’t had to worry about the whole calling in to work side of things. So yeah, we’ve just – we’re very lucky that we are just able to focus on getting Arthur better.

We have, we have a very good family. We’re a very close family. My wife’s mum and dad, they only live a couple of hundred yards away from us. And my mum only lives ten, fifteen minutes away. And we’re lucky in the sense that whenever she’s had to go into hospital or anything, somebody’s done something to be with Ella when she’s ill, whether it be at home or at the hospital. So one of us at some point will have to be off work, but it’s worked in the way that it’s not sort of impacted family life that we’ve, it’s really affected as such. If that makes sense.

Yeah. Either I will take Ella to the hospital, and my wife will stay with our other child, until say perhaps her mum and dad are around and the can have [sister]. And then [wife] will come to the hospital to see us. Or vice versa. Or even if, for some reason if our – my wife’s parents have got Ella, they’re looking after Ella that day and she becomes unwell, they know the procedure, they know her just as well as us, if not the same. They know what, what to look out for. And they just phone us and say “Look, obviously don’t panic or worry, she’s not, she’s not been well. She’s at the hospital, just get here when you can, sort of thing, and we’ll talk you through it, etc.” So we, we have got a very good support network in terms of it doesn’t really interrupt our family life too much.

So, yeah, it was really tough, yeah, it was difficult time. Yeah, it really was but as I said, we were lucky to have the support we did. I’ve, I really don’t know how we would have done it without the support of our friends and family. It was, just logistically even let alone emotionally, [laughs] it would have been really, really hard. And being, you know, if Alfie became ill which he often was, like his immune system was much more suppressed than it is now in the drop of a hat we would get a temperature and it would just be like, Right I’ve got to go hospital immediately, call my husband. He’s in a meeting at work and, you know, all these things. You know, packing your bag, having a new born baby and, yeah, it was, it was a difficult time.

Yeah when, when the children are ill I use my annual leave.

Right.

To look after, obviously I don’t, we don’t get any paid leave to look after the children. Obviously if we’re half the way through a day there’s an emergency and you have to attend, you can go home and, and that’s fine, but the following day you either take unpaid leave or annual leave. What we’ve done that yeah I use my annual leave to be home with, with them which means then that I haven’t got annual leave actually, to go on holiday. So there’s been a few years now we haven’t had enough days left for holiday. So this year, for yeah there was financial impact as well that I have wanted to go to see my family in [Country] where I’m from and I had to take unpaid leave to be able to go there because I didn’t have any holiday left. So then I guess that makes your life even harder that although I’m not off from work anymore than my colleagues but then it seems like when you quite regularly have to take time off that you are not there, but they are using the same amount of days than they do, they just take it as a holiday. I take them to look after ill children. Yeah. It’s a bit of a juggle. Sometimes it’s, I’m lucky that my husband works in shifts so he might be home on, you know, Monday/Tuesday/Wednesday anyway, so he can look after the children when they are ill, which he does a lot. So he’s, we share and then he’s taken annual leave from work to look after the children and his employer gives him a few days a year to look after children when they’re poorly. Whereas mine doesn’t so but overall then we’ll just have to juggle.

The flu again in my head because of all of the serious conditions that they have and because we’re back and forth to the hospital the flu isn’t really a big deal in this household. So it doesn’t really have a big impact on the family because it’s just an illness. It might mean we don’t go to the toddler group that we go to every week or we don’t go to this place, we don’t go to that place. We’re quite, we’re quite a laid back family I think that you have to be. We don’t have strict routines or anything like that. They, they go to bed around 7 o’clock but we don’t have that if you’re not in bed by 7 o’clock. We don’t have a specific tea time we have tea around that time each day. I think for families who maybe do have a strict routine you have to do this at this time, you have to do that, you have to do that. It might be more difficult but life changes every day here every single day. He found out last week he’s off to Cyprus for four months next week. Just gets thrown upon us. So the flu is, it’s not a big deal here.

How did you manage when sort of she had to stay in hospital for several weeks?

Oh [laugh]. Oh, it was really hard. We, we were lucky because we had one child. I mean, I don’t know quite how we’d manage it with both of them. But , we were able to take it in turns to stay with her. I was on maternity leave, which I had to – I didn’t go back to work for another three years. Which was not part of the plan, but [laugh] that’s obviously what had to happen. And it was, it was incredibly hard. You know, we were very – incredibly sleep-deprived for a year and a half. We didn’t sleep, really. So I think we just hunkered down and just took it a day at a time. And just – I don’t know. We didn’t make any plans, we just – we literally lived in the moment. And whilst it was going okay for that moment, that was alright. [laugh] And then if something occurred, we’d just deal, you know. It was just literally moment by moment, dealing with it. That’s the only way you can really, because otherwise everything is just, you know, everything just becomes too much. So that’s how we did it.

But so there’s a lot of plans that you make and things that you’d try and do and, and things that you want to do and the trouble is it’s so unpredictable. And it happens so quickly. He can be absolutely fine one minute and then as you say because of the underlying conditions he’ll get something that will just be a sniffle to anyone else and you can, you know that it’s going, it’s going down. It’s going the wrong way. And the two things that have saved us with that other, the medications that having the prednisolone at home in my hand and not having to go and seek it, and having the montelukast which if we’d put it in early enough seems to stop. Because, you know it was very unpredic-, with that ending up in hospital every five min-, and we ended up in hospital on holiday, visiting people, you know it was just, it was just you, very very disruptive and I was in hospital all down in [town] near [city]. And so I was staying with him and [partner’s name] had to come back to work and [partner’s name] works shifts anyway. He’s a train driver so he couldn’t really not go into work and he, and he works shifts so it’s not easy even if he can know when he’s available or not available. And so the whole being in and out of hospital thing was, was really difficult and made things very difficult as a family just to do anything that a normal family would do from holidays down to visiting people and trips and things you plan.

And, and also his, his relationship with other children because if you’re constantly having to say, Oh no I know we said we’d come to the park but we can’t because he’s not well. And I know, oh sorry I know you were supposed to come around to play but you can’t because he’s not well. And then and children get fed up. You know, they’re fickle things [ha]. And if the happens a few times they think, oh well I won’t bother with him them [hah]. Cos you know there are other children I can play with who actually will turn up.

Well as I say in the past we’ve had to maybe cancel family events, we’ve had to re-schedule important mile stone occasions like his Christening,

Christening.

I, we’ve had to cancel a birthday party in the past because he’s been ill. Things like that, or we’ve had to say we can’t visit for example my Granddad if Daniel is, he has a cold or a chest infection. Even if he’s on the way to recovering because I don’t want to expose my Granddad to that type of infection. We would prefer to stay at home and not, than to do that. So we’ve frequently had to change our plans for doing things, in terms of impact on myself and my husband.

And it’s extremely draining on the whole family. And everything comes to a standstill, you know, family plans, days out, you know, not just for me or my son whose unwell but my other son, you know, my partner. Everything has to stop. And I think we just concentrate on getting my son well, because checking him through the night every two hours is just beyond exhausting and I can’t tell you. I think that’s probably one of the worst things. But nobody really tells you upon diagnosis, the night checks that you do. That is you know.

And this is sort of when he’s, apart from this one, it’s when he’s ill that you have to check every two hours.

Yeah, yeah, the main advice for their consultant is every two hours and that’s day and night. And, even if it were a flu or the gastro where it’s low blood sugar levels you have to both check, any sick days it’s two hours through the night.