Sue

Amy was born prematurely at 24 weeks and diagnosed with chronic lung disease. She came out of hospital on home oxygen, but eventually she did wean off it and went on to use inhalers. When she was one year old she had surgery to insert a gastrostomy button. Since then and until recently, she has been gastrostomy fed. She also had Nissen fundoplication surgical procedure to treat her gastroesophageal reflux disease (GERD). Amy used to get colds and flu-like illness very frequently, but over the years she has gotten better. At present she is just on vitamins and on a pro-Cal to help her with her calories intake.

Amy was born prematurely at 24 weeks and diagnosed with chronic lung disease. She came out of hospital on home oxygen, but eventually she did wean off it. After oxygen dependency Amy was started on inhalers. She was on Becotide daily and Salbutamol daily and she was also on Atrovent. She went through phases where she would need to take her Salbutamol every four hours.

When Amy was about one year old, she developed feeding problems and she needed to have surgery to insert a gastrostomy button. Since then and until recently, she has been gastrostomy fed. She also had a surgical procedure called Nissen fundoplication, to treat her gastroesophageal reflux disease (GERD)

Frequently and throughout her childhood, Amy used to get colds and flu-like illness which aggravated her chronic lung condition. Her symptoms usually were high fever, lethargy but above all breathing difficulties. She often ended up in hospital. She is a direct admission patient so in A&E, she was seen by a paediatric doctor without delay. Usually, Amy had nebulizer treatment up to three times at a time and then she was put on Salbutamol inhaler every twenty minutes. She was allowed to go back home when Salbutamol use decreased to every four hours. Often, she was admitted as an overnight patient or had to stay longer depending on how she responded to the treatment.
Antibiotics were seldom prescribed because blood tests showed that infections were often of a viral nature. Sue was explained that antibiotics wouldn’t help with Amy’s chronic lung condition either. On one occasion the blood test showed that Amy was suffering from a secondary infection; bronchiolitis. Her symptoms were severe and she needed treatment in hospital that included antibiotics injected through a cannula for five days. But overall, Amy’s main treatments have consisted of oxygen, nebulisers and inhalers. Sue says that she worried a lot when Amy was little, but now that she is growing and getting stronger things have started to get easier.

As Amy gets older she tends to have less colds and flu-like illness and on those occasions when she does get a viral infection, they tend to be less troublesome and are mostly sorted with over the counter medication. Amy is also less dependent on inhalers and she only needs them after PE lessons or after running around. Amy and Sue used to get the flu vaccine every year, but in 2014 Amy asked not to have it and she didn’t get any episodes of winter colds or flu-like illness.

Sue explains that when Amy was unwell and needed to go to hospital, she had to find someone to look after her two other children. Her mother, mother-in-law and sister-in-law helped, but often she and her husband had to organise their family routines – like taking and collecting the other two children from school, without much support. This period was very hard for the family. Sue couldn’t stay in hospital because she needed to look after her other two children and her husband had to go to work.

Amy, now aged 10, spends week days in hospital and weekends at home. After her gastrostomy button was removed, she is being supervised while she is introduced to food orally. Sue says that this last year was brilliant’ with no flu vaccines and no episodes of flu.

Amy has chronic lung disease. She didn’t have complications from the flu-like illness but it takes her longer to recover from illness than her siblings

Age at interview 45

Gender Female

But any complication from the flu?

No, just probably took her longer to get over things than sort of one of the healthy children. You’d notice more. She’d sleep a lot longer. Whereas if the others ever got it, they’d be up and running around within a couple of days, whereas Amy, it might take a week or something like that.

And how long it took from the moment that she was taken into hospital and she went through all that and then you brought him, you brought her home, with kind of many, load of puffs every four hours to go back to, let’s say, normal.

Probably about a week. So, obviously they gradually, even though she should be on high amount of puffs with stretches, or it would be six hourly until eventually she was down to hardly using it. But I suppose from start to finish, on average it was about a week.

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Amy has asthma. During the first eight years of Amy’s life she went to A&E frequently with breathing problems brought on by flu-like illness. Her parents are now more confident about managing her illnesses at home.

Age at interview 45

Gender Female

And when you took her to A&E to see the paediatric doctor, what did they do?

A lot of the time they literally would put her straight on a nebuliser and then she’d have to have another nebuliser. I think she’d normally have around three of them and then they’d try and get her onto the Salbutamol inhaler and literally we had to get that down from twenty minutes to about four hours before she was allowed to come home.

And, so she means that she will spend time. Roughly how often she had to go into hospital?

I think for the first eight years of her life, I think Amy spent every Christmas in hospital. Whether it was just a daytime or whether she was actually in I think one, one year we’d literally done something like seventy attendances in a year.

To the A&E?

To the A&E. So. And the majority of them she did actually have to stay in whether it would be just overnight or a lot longer.

Because of her chronic lung condition. Okay, so. And each time was the same kind of treatment?

Yeah, we literally had the same treatment. Sometimes, obviously, she’d respond quicker and other times it would take a little bit longer.

Okay. Where sort of episodes which were particularly bad or you were particular worried about her?

I think it’s just when she was younger, everything you did worry more. Because obviously having two healthy children before, and then having Amy, it was a case of I’ve done it all before with the others, but they’re fine. But I don’t know whether it’s cos Amy was so prem. You did sort of panic that little bit more. And now I look back at it and I think, I didn’t need to take her quite so many times, probably. But it’s just panic.

But weren’t you told advice by the doctors to?

Yeah. I’d always phone up first and literally say, these are Amy’s symptoms, what, what do you want me to do? Sometimes it will be, give her Calpol and see if it goes down. But the majority of the time it was, take her in first and let them look at her.

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When Amy was younger, her mum used to stay with her in hospital until she fell asleep at night. Then she would go home so that she could get her other children to school in the morning.

Age at interview 45

Gender Female

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.

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