Michael

Michael’s daughter, Ella has complex medical needs and at birth she was diagnosed with chronic renal failure (stage 4). She has several other conditions including gastric telangiectasia, hyperparathyroidism, lymphedema and Weber syndrome. She is on Thalidomide, Amlodipine, tranexamic acid, Omeprazole, Atenolol, Renvela, Alfacalcidol drops and sodium bicarbonate.

Any infections such as flu or flu-like illness is treated with the utmost vigilance and care by parents and doctors alike because it could have severe impact on Ella’s renal condition. Michael is in the process of adding Ella on the kidney transplant list and he is undergoing tests to see whether he would be a suitable donor.

Michael is Ella’s father and she is six years old. She has complex medical needs and at birth she was diagnosed with chronic kidney failure. She has several other conditions including gastric telangiectasia and hyperparathyroidism.

As part of her medication regime, Ella takes an immunosuppressant drug which lowers her immune system making her more prone to infections such as flu-like illness. Michael says that as parents, they are very aware of the serious complications she could develop if an infection like flu-like illness is not dealt with fast. Michael and his wife take Ella’s temperature every night before she goes to bed to be on the board with things. If she has a temperature, they give her Calpol – two or three doses of it to see if it brings it down. If they are worried they seek medical advice over the phone from one of her doctors at the local hospital. If Ella’s condition does not improve, they take her to the hospital where they have open access – meaning they can just turn up with her at the hospital.

Michael feels that they know their child better than anybody else and can tell when she is unwell. With flu or flu-like illness, Ella tends to develop a temperature but lack of appetite and energy are also symptoms that indicate she may have an infection. Because of Ella’s kidney condition, keeping a watchful eye on how much Ella drinks is of the utmost importance – whether she is ill or not. Dehydration could have serious consequences, causing full blown kidney failure, the need for dialysis and eventually the need for a kidney transplant. Michael says that they are in the process of trying to get Ella on the transplant list and he is undergoing tests to see if he is a suitable donor for her.

Michael describes the medical care Ella receives as excellent and as second to none. He says that over the years they have established a good, working partnership with consultants that care for Ella, and that some of them feel more like family. Michael says that when Ella is seen by doctors that are unfamiliar with her medical history, they listen to her parents and depend on them for information.

Michael explains that health professionals in their local hospital know Ella well, and are aware that she does get flu-type symptoms quite easily and quite regularly. So, when Michael calls the hospital for advice, they usually asked him to bring Ella into the hospital to review her. Sometimes they have to wait to be seen, but if doctors see that she is unwell, they see her right away. A bad episode of flu-like illness requires for Ella to have IV fluids, blood tests, IV antibiotics and/or oral antibiotics. Sometimes Ella stays overnight in hospital and discharged home the next day with oral antibiotics. When she develops flu-like related complications like a chest infection or ear infections, doctors give her a course of IV antibiotics for two days, and then they send her home with a course of oral antibiotics.

Within a winter year Ella gets three or four flu-like episodes that do require antibiotic treatment. For Michael the key is to be attentive to her symptoms and to nip in the bud any infection that may develop into something more serious. With antibiotics, Ella usually bounces back in about three days.

Michael and his wife are much supported by their families. Grandparents live nearby and routinely help with looking after Ella and her sister as well as visiting her when she is in hospital.

Ella’s complex medical needs have had an effect on everyday family life. Ella loves school but her attendance is patchy and much depended on how she is doing health wise. And Michael has to take time off work as and when needed.

Michael wants Ella’s health to be taken seriously when she gets ill and wants doctors to listen to him as a parent.

Age at interview 32

Gender Male

And if there is anything you would like to say to health professionals looking after children like Ella.

Yeah. As I said before, I don’t want to come across as though I know more than what doctors know, because I most certainly don’t. But just listen to parents. Seriously. You know, at the end of the day, we’re worried about our children, and are there, and that are poorly at the time. Yes, it might only seem like a cold, but as we’ve established, that somebody like Ella with quite a complex background, if it’s not took seriously it can have serious consequences. So, you know, just be – just think back, that if you’re a parent yourself, what would you want somebody to do with your child if you was in their situation? You’d want everything. You’d want them to be doing everything possible to make sure your child gets better as quick as possible.

Okay.

Just as much as you might have thirty years medical practice at the back of you, you know, just listen to what the parents have got to say because they live with that child 24/7.

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A good support network has helped Ella’s parents to manage their family and work schedules when Ella is ill.

Age at interview 32

Gender Male

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.

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Ella’s younger sister visits her when she is in hospital. It helps her to know that Ella is okay and she doesn’t feel left out.

Age at interview 32

Gender Male

And obviously the other impact is obviously her sister. In the early stages, [sister] didn’t really sort of understand why perhaps she didn’t see me as much or mum was around as much, because Ella was in the hospital. But now she’s older and she knows, if Ella has to stay in the hospital for a couple of days to a week, then it start to play on [sister], because we’ll come home and she’ll say “When’s Ella coming back? Can I go and see Ella tomorrow?” And things like that. So yeah, it is noticeable effects that it can have.

Yeah. She’s missing her.

Yeah. Oh yeah.

Yeah. Okay.

And it’s going to be the same for when obviously the new one comes, in two weeks.

Yes.

This one will get to know that obviously Ella’s, you know, not your normal six year old or seven year old child, and she’s got complex issues, and sometimes mummy and daddy will have to stay at the hospital with her so you won’t see mummy or daddy as often as what you would normally. And things like that. And obviously then you get the questions, “When’s Ella coming back home? And why’s Ella in hospital? Why have you got to stop with her?” And things like that, so.

Yeah. Does she spend times in hospital when Ella is in? Does she goes to visit her?

Oh yeah, yeah. They always come up and visit. And sometimes she’s there all day, she’ll come in the morning, when – because [sister] at nursery at the minute, she’s not in full term school like Ella. So she only goes three days a week in nursery. So the other days if Ella’s in, on a Tuesday when she’s off with me, if I wasn’t at the hospital with Ella, she would come to the hospital and we would be there most of the day. And then on Fridays when she stays with grandma, grandma would come up and see her with her, and have a good half day to a full day again, visiting and playing and doing. Some days obviously when Ella’s been poorly she’s not been up to having visitors. So, when [sister] comes up she’ll only probably stop for an hour or two, and then go. But yeah, just enough so that she knows that Ella’s okay, and what’s happening, and things like that, and she’s not just feeling left out.

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Ella loves school and her parents wouldn’t keep her at home just because there were viruses going round. But they know when she is too ill to go and needs to stay at home.

Age at interview 32

Gender Male

But when it comes, we try to keep her in school as much as possible because we know it’s important for your child to get a very good education. You know and, and the best thing for Ella is, she actually loves to go to school. That’s all she wants to do. Even when she’s ill, she still wants to go. Which I, I find amazing. But, you know, there’s some times where you have to draw the line and you have to keep her off. But where we can, we will let her go to school. But when she’s, when she’s ill, like when she’s had the chest infection and things, she’s just not been well enough to really get out of bed, so she doesn’t go.

And does the school let you know if there is a sort of a bug, an infection going around? And if there is a flu?

Sometimes. But we tend to know, because you hear parents in the school, saying “Ooh, my little one weren’t well the other day, being sick all night.” Or, “He’s got a really bad cough.” Or something like that. Then we know we need to be more, even more so looking out for Ella. And pay much more –

Okay. But you don’t keep her at home?

Sorry?

You don’t keep her at home?

No. No.

Okay.

It seems a bit harsh. But as I said earlier, she loves to go to school. And to keep her away from school just because somebody in her class might have a bit of a cold, seems a bit harsh on her. So it’d be like we’re punishing her, in a way. So we do try and send her when we can, and when we know she’s not ill. But when she’s at the point where she’s not well, then that’s when we don’t send her at all. We know when not to send her.

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Ella’s parents stay in close contact with her hospital renal specialists when she is ill.

Age at interview 32

Gender Male

And what do you do? I mean, do you manage it at home? Do you get to call the doctor?

It all really depends on, on how Ella’s sort of presenting at the time. If we find out that her temperature’s fairly high, we will try and – well, we do give Calpol here. And we’ll probably leave it two or three doses of Calpol before we sort of start thinking we ought to talk to a doctor. But sometimes the Calpol just tends to manage the, the temperature.

Okay.

That’s it. And then because of all her other things, and because we know Ella so well now, and we’ve learned over the years that it’s not always a bad thing to just be in touch with somebody like a doctor, just for some advice. Because you know, it’s alright thinking ‘oh, I don’t to be a burden to the doctors if it’s about nothing’ but when you’ve got a poorly child to start with already, if you don’t do it and something happens, you’d never forgive yourself. So we always think right, we’ll give it a few hours, and if she seems to either get worse in that time then we don’t ring we just tend to pick her up and take her straight to our local hospital. Where we do have open access there, so we can just literally turn up, unannounced. But if we think she’s not right and we just need a little bit of advice as to whether they think they ought to have her in and do things, then we will phone.

Okay.

And the majority of the time it’s just because even though the temperature’s coming down with the Calpol, she still might not start eating or she might not be drinking. And obviously we know the implications, that obviously if she doesn’t drink it can cause further problems that can be irreversible, so.

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Ella has open access to the children’s ward. She has flu-like illness frequently and her parents feel they have a good relationship with the doctors on the ward.

Age at interview 32

Gender Male

And when you need to consult the doctors, how long do you wait before you consult the doctor? Or it depends on that specific flu episode?

Yeah. Again, it varies. Sometimes, I think because they’ve got to know Ella now, and that she does get flu-type symptoms quite easily and perhaps quite regularly. And because we have the set-up now, that we have open access to our local children’s ward, and we get to know the doctors and consultants on first name terms, they’re very good. We sort of work together. They tend to just say “Right, come in, and we’ll review her.” And sometimes if they’re really busy, if they’ve got a really heavy influx of patients that need to be seen, then we can be waiting two, three, maybe four hours before she’s been medically viewed. But if we turn up and she’s, you can physically see that she’s not right at all, then it’s usually – we’re, we’re straight in, and she’s on a drip and they’re taking bloods and they’re sorting some of – whether it be IV antibiotics or oral antibiotics out, to get her back on track, and IV fluids. But it can vary. Most of the time it’s usually within the, within an hour or two that we’ve been seen, and either discharged home with oral antibiotics, or if it’s – like the chest infection and the ear infections that she gets sometimes, they’ll say right, we’ll give her a course of sort of IV antibiotics over the next two days, and then you’ll go home with a course of oral antibiotics. So it, it does vary. But usually we’re seen within the first two hours, usually.

Yeah, I think we just guide the doctor in the way of, you know. This is, I mean, there’s been times where we’ve gone to, to a local hospital and you’ve got a, like an on-call locum doctor that doesn’t really know Ella’s case. And I can probably count on one hand the doctors there who’ve just basically [beeping noise] given us what [beeping noise] we’ve sort of said usually happens, will say to us “You see the doctors when you see them, what would they do with Ella at this point, given her symptoms?” I’d say, “Well usually they would obviously do a blood test, make sure her kidney function and everything else is looking okay.” And then if they were okay and she’s still got these sort of type symptoms, generally we would give antibiotics, whether it be amoxicillin or – can’t remember what the other one’s called now. Should do, we have them that often. Is it co-amoxiclav, or something like that?

Yeah, it could be. Yeah.

Yeah. Things like that. And then they’ve just sort of said, “Right, well we’ll just do that then.” And then we’ve ended up coming out a couple of hours later with oral antibiotics. And about four days later, Ella’s symptoms seem to be a lot better than they was when we first went.

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Michael says the benefits of treating Ella with antibiotics early is it nips it in the bud’ and takes less time for her to bounce back.

Age at interview 32

Gender Male

Now, I want to ask your views about antibiotics, because Ella seems to have had quite a lot over the years. Do you have any concerns about that, or?

I mean, I haven’t.

Or what do you think?

I haven’t, I haven’t. Because you hear people saying that obviously if you have too many antibiotics, when you do get an illness they’re not as effective. But in the other hand, [sigh] when you see your child there that’s poorly, and needs the antibiotics to make them better, then how can you not say “don’t give them?” You know? So yes, I have concerns if doctors were just giving them out willy-nilly. But even if they wasn’t really following it up that they had flu-like symptoms, if someone just went in and they’d got a bit of a sort of a temperature that wasn’t that high, but then decided ‘oh, we’ll just give them antibiotics just to cover us. Yeah, that’s probably not the way to go. But at the same time, obviously you want to be sure that you’re not missing anything, and obviously the antibiotics would, would nip it in the bud if you caught it that bit earlier. And that, I think that’s, that’s the key with Ella. The slightest symptom, and the first sign that we get that she’s not right, if we can get her on the antibiotics, it takes a lot less time for her to bounce back from it than what it would be that if we let her sort of carry on with it for a day, three days to a week. The longer it’d go on, the longer it would take for the antibiotics to work, and get her over it. Whereas if we was on the ball and we, we noticed her symptoms fairly quick, within a day, and we got the antibiotics started straight away, generally within, within the week – as I say, three days of being on them, you notice a difference.

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