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Michelle

Age at interview: 40
Brief Outline: Jack has complex medical needs: Lennox-Gastaut syndrome (childhood epileptic encephalopathy), Arachhnoid Cyst, Chronic lung disease, Scoliosis, gastroesophageal reflux disease (GERD) and he is oxygen dependent. His parents have trained and do a lot of his therapies at home and are greatly supported by the community and hospital teams looking after Jack. In 2014 Jack was seriously ill with influenza and spent three weeks in the Intensive Care Unit (ICU). Six months after the influenza episode things are still settling down; his liver function tests are still abnormal and his blood pressure continues to be lower than before the flu episode.
Background: Michelle has two sons aged 14 and 11. She is a full-time carer. Ethnic background: White British.

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Jack, aged 11 has complex medical conditions. At the age of seven he was diagnosed with Lennox-Gastaut syndrome (childhood epileptic encephalopathy). Previous to that, when he was five months old he was diagnosed with West syndrome or infantile spams and Arachhnoid Cyst for which he had neurosurgery twice. His West syndrome is controlled with medication. For about seven years he was on the Ketogenic diet but developed gastroesophageal reflux disease (GERD). He also has chronic lung disease, Scoliosis and is O2 dependent.

By the age of ten he had his first chest infection and after that he had pneumonia and he was left oxygen-dependent. And for the next eighteen months he was in and out of the hospital with chest infections, rhinovirus infections and pseudomonas pneumonia. After the bout of infections, he was put on a jejunostomy feeding tube. He now has his gastrostomy for his medications and all his feeds are down his jejunostomy. Up to the age of five, Jack could eat orally and drink out of a bottle but all of a sudden, he lost his ability to swallow.

Jack has no speech and he is a non-walker but he can crawl and he sits up on his own. He has two sessions of chest physio every day, he has two hyperbolic nebs every day and he is on ALF overnight. Jack also has precocious puberty and for that he is on Zoladex implants. 

Jack’s parents trained to do the chest physio, the nasal suction, oral suction and his feeds. So a lot of the interventions he needs are done at home instead of in the hospital but they have good support from the community chest physio and community matron. They were also taught how to listen to his chest and have their own stethoscope. 

Two years ago, since his second chest infection, Jack was started on antibiotics as a prophylactic treatment - 7.5 ml of azythromycin daily. He sometimes has needed stronger antibiotics to cope with infections that have cleared after a couple of weeks. His mother finds that Bio-Kult has helped him overcome the side-effects of antibiotics; colitis that leaves him lactose intolerant.

In Christmas 2014, Jack became ill developing high temperature, sleepy and was not breathing well and struggling to cough. Michelle started him on dry antibiotics augmentin, which is the first line for at home treatment of bacterial infections. But the following day Michelle took him to A&E to get a second opinion because she knew that ‘he wasn’t right’. The consultant admitted Jack straightaway and when the results from the sputum sample came back it showed it was influenza. Jack went on to developed life threatening complications and he was in ICU for three weeks. He was treated with Piptaz. 

Jack’s parents have great support from the healthcare teams that have attended to  Jack’s complex care needs over the years, including consultants, the GP surgery, the community team, hospital nurses, surgeons, physios, paramedics and even the hospital porters. But Michelle experience with the registrar in A&E and a young consultant in ICU that Christmas of 2014 was far from positive. Michelle felt that the registrar thought she was exaggerating Jack’s symptoms, but luckily the consultant intervened and Jack was admitted. In ICU she encountered a young consultant that was not interested in listening to what she, as a parent, had to say and treating Jack’s complex medical needs ‘by the book’. Michelle says that the ICU consultant’s attitude was of speaking at her rather than to her.   

Michelle explains that influenza affected Jack’s liver and his blood pressure and had to take medication for both and it also affected his oxygen requirements.  Six months after having influenza things are still settling down; his liver function tests are still abnormal and his blood pressure continues to be lower than before the flu episode. 

Michelle and her husband’s attitude have been to treat Jack like any other normal boy. They have another son and treat them both the same. Until he developed influenza, Michelle said that he was quite a healthy little boy considering all his medical issues. 
 

When Jack had flu he became very poorly very quickly.

When Jack had flu he became very poorly very quickly.

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So you didn’t have much time to manage the flu or the influenza … 

No.

… at home?

No.

It was literally just overnight and then, because he was a bit off on the Saturday but then he perked up on the Sunday morning and was fine. And then, I’d put him in his wedge and he’s just get a bit whingy so I thought, “Oh, I’ll put you back in bed”. And then I thought, “He is roasting hot”. So it was literally come on him really in the space of half an hour I think. It just, it was really quick. I think that was another thing as well that made me go, “Oh, hang on a minute”. Because normally they go like a bit –urrrgh – and then they’re a bit nnnrrrh and then it’s, it’s like a gradual isn’t it? But with Jack it wasn’t, it was like that, really quick, in the space of half an hour you’ve gone from being his little normal self to being poorly.
 

Jack was seriously ill with flu-like illness and spent three weeks in intensive care. Six months later his liver function tests are still abnormal and his blood pressure is lower than before the flu episode.

Jack was seriously ill with flu-like illness and spent three weeks in intensive care. Six months later his liver function tests are still abnormal and his blood pressure is lower than before the flu episode.

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So how was the recovery process?

Wasn’t too bad, he sort of, he did, I think, was nine days IV piptaz, because his CR, the, they started him on, to my knowledge, they started on the antibiotics because of the changes to his like chest x-ray in A&E, so they ordered them in then. But his CRP never went above 41, so I wasn’t really happy with him having the antibiotics because I think, I know it raised, but Jack’s had a CRP of over 200 before today so I would prefer to keep sort of good antibiotics for when he really needs them. And I felt at that time he didn’t really need a strong antibiotic which is piptaz and like, probably one of the best to give. And the Tamiflu I think was seven days, I think. And then after they finished [child noises] it was just, I think, a case of getting his lungs clear because a couple of times we thought, “Oh, we’ve got him ready for HDU”, and then they’d listen and they’re like, “No, he’s a bit quiet again on the other side”. So he was very positional as well and afterwards with his secretions if you like so he was on, you know, the big Hill-Rom bed that rotates you to try and keep, because he, he, like, they’d say, “We’re quiet on the right, so we’ll work on the right”. And then a couple of days later he’d collapse on the left. So it was trying to find that balance of getting him and then, be, weaning him down to see if PAP ASB and, and he’d collapse whole lung and have to go back up to Bipap and then I think, he had the shingles as well which I think set him back a little bit. And then after about three weeks I think he just thought, “You know what, I’ve had enough of being sick”. 

I think or he just must have felt great, because, it’s my understand, I mean, I’ve never had the flu that you feel really lethargic and everything and I don’t know if it was because he was on the Bipap so much that because that’s done all his breathing for him he’s been able to sort of recuperate a bit quicker than what he normally would. I mean, he was still at home in more, in he’s still in more oxygen overnight than what he has been previous slowly weaning that down. And his heart rate as well is considerably lower than what it was before the flu. So I don’t know if that was, if that’s like an ongoing thing or just a complication or, and his liver is still abnormal. So he’s not totally over all the effects that it caused but I think the initial thing. He see, he was a lot better. 
 

The A&E consultant trusted Michelle’s instinct that Jack was very poorly and told the registrar to listen to Michelle and observe Jack. He was admitted to hospital as an inpatient.

The A&E consultant trusted Michelle’s instinct that Jack was very poorly and told the registrar to listen to Michelle and observe Jack. He was admitted to hospital as an inpatient.

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And I just, it’s really difficult because they were asking me in hospital and I just couldn’t quite put my finger, I just knew something wasn’t right. As I said, it’s like instincts of you know your child. It’s like when a child cries with a high pitch cry you know that they’re hurt. So I just knew he wasn’t right, because the Reg in A&E was like, “Well what have you brought him in for? He’s all right”. And it was the consultant said, “No”, he said, “If Mum’s worried we’re going to see to him”. And there was changes on his x-ray but not on, where you’d be like overly concerned. And he thought if it was OK for the two, and then he did say to me like, “When the infection peaks he will go rapidly downhill”. He said, “Because normally we only see them in hospital when the infection’s peaked”. Because, we miss the very first warning signs, which for Jack was the respiratory rate and the temperature. And immediately maybe just a little tiny bit more oxygen. He’s permanently on half a litre and he was in by three quarters to a litre of oxygen. So, which isn’t major but you think, and another sign with Jack is Jack doesn’t have seizures when he’s sick.

He’s the complete opposite to most people with epilepsy, so he does not have seizures at all when he’s poorly. And he, I’d be, we hadn’t seen the seizure so we were a bit, and his condition is like constant seizure activity. And they were like sort of the main things why we, we took him in. But I think a lot of people in A&E were like, “Why have you brought him?”, because he’s not, you know, he’s not like a, lifeless and floppy, he’s and I was like, “No, he’s not well, I know my child. He is not well”. And A&E, the ICU consultant said, “You did exactly the right thing”, he said, “Because that is how it presents”. He said, “It’s like a little niggle, like a little bit of a cold first couple of days”, he says, “and then it just, once he gets it”, he says, “it just hits you”. And it affected Jack’s liver, it affected his blood pressure. He was on medication for his blood pressure. He was on for liver, he was on constant high fluids for his blood pressure and he was vitamin K for his liver. He had SVTs for… so it, it sort of like, and then he went into urinary retention. So it went like around his body I think sort of letting itself be known and luckily when it did we were on intensive care and they were best equipped to deal with it on there.

So what would be a good, an ideal scenario… 

I think…

…for parents like yourselves?

… having, I mean, I understand everybody’s got to learn, because it was a learning curve for all of us. I mean, A&E generally is fabulous, because it’s the same staff that I’ve known for eleven years and it’s just they’re the ones that rotate through, like sort of the newer qualified think they know everything or they’ve come from adult hospital and it’s totally different dealing with children. 

And I think we did used to have what we called a Lifeplan, and that was like A&E had their own notes so you don’t get questioned or hauled away from your child and stuff and I think it’s just someone that’ll be prepared to listen and, yeah, it might have been a subtle change but that sort of change, a massive sort of change for us. Because if, as when we seeing that registrar and she give me a prescription for whatever and I brought him home, he might not be here today. It was only for the fact that there was a consultant there and was like, “No, look at what his condition is and look at your patient”. That’s what he said to her. “Look at your patient.”
 

Michelle really appreciated the support she got from nurses, who told her to go home for a few hours to see her other child, when her son was in hospital over Christmas.

Michelle really appreciated the support she got from nurses, who told her to go home for a few hours to see her other child, when her son was in hospital over Christmas.

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The staff were fab. They were amazing. I can’t, they saved his life, I can’t knock, you know, they were great, they were lovely. And it’s like they look after you as well as the child. And, I mean, it’s like Christmas Day they sat in the cubicle and this, this bossy sister come in and she was like, such and such, you know, and they said, “Oh yeah”, they, and I was saying to the staff, you know, about the other one, she said, “Have you got another child at home?” And I said, “Yeah”. “She said, “Get out”. And I was like, “What?” She said, “Go home for few hours and see your other child”. She said, “You’re not going to get a better qualified babysitter than me”. She said, “Go home. He’s fine. He’s not going to wake up, he’s going to stay fast asleep and be a good boy for me. Go home for a few hours”, and chased me out the ward. And I needed it. I needed to be told because I think a lot of times that you feel guilty leaving. And, but you’re torn because you’ve got another child. So, she was amazing. Like she, because we live in the city we’re not allowed to stay in the house normally, but she said, “No, this mum needs a room”. So I was there, whereas normally I would have to come all the way home and then go all the way back to the hospital if I needed to. So I felt like I’d got loads of support as well. And some, someone to lean on.
 

Michelle took Jack to Accident and Emergency with a high temperature (he developed respiratory failure). The consultant and chest physiotherapist said she did the right thing.

Michelle took Jack to Accident and Emergency with a high temperature (he developed respiratory failure). The consultant and chest physiotherapist said she did the right thing.

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So I just knew he wasn’t right, because the Reg in A&E was like, “Well what have you brought him in for? He’s all right”. And it was the consultant said, “No”, he said, “if mum’s worried we’re going to see to him”. And there was changes on his x-ray but not on, where you’d be like overly concerned And he thought if it was OK for the two, and then he did say to me like, “When the infection peeks he will go rapidly downhill”. He said, “Because normally we only see them in hospital when the infection’s peeked”. Because, we miss the very first warning signs, which for Jack was the respiratory rate and the temperature. And immediately maybe just a little tiny bit more oxygen. He’s, he’s permanently on half a litre and he was in by three quarters to a litre of oxygen. So, which isn’t major but you think, and another sign with Jack is Jack doesn’t have seizures when he’s sick.

He’s, he’s the complete opposite to most people with epilepsy, so he does not have seizures at all when he’s poorly. And he, I’d be, we hadn’t seen the seizure so we were a bit, and his condition is like constant seizure activity. And they were like sort of the main things why we, we took him in. But I think a lot of people in A&E were like, “Why have you brought him?”, because he’s not, you know, he’s not like a, lifeless and floppy, he’s, and I was like, “No, he’s not well, I know my child. He is not well”. And A&E, the ICU consultant said, “You did exactly the right thing”, he said, “Because that is how it presents”. He said, “It’s like a little niggle, like a little bit of a cold first couple of days”, he says, “and then it just, once he gets it”, he says, “It just hits you”. And it affected Jack’s liver, it affected his blood pressure. He was on medication for his blood pressure. He was on for liver, he was on constant high fluids for his blood pressure and he was vitamin K for his liver. He had SVTs for… so it, it sort of like, and then he went into urinary retention. So it went like around his body I think sort of letting itself be known and luckily when it did we were on intensive care and they were best equipped to deal with it on there.  

But we were lucky with like an experienced consultant was on A&E. Because the consultants, sorry the respiratory consultant that looked after us the first couple of days on the ward was a brand new consultant and she was fairly, she knew what was right, wasn’t prepared to listen to me when I, when I suggested things or asked for things for Jack.  And it was the chest physio in the end that sort of knows Jack and was like, “No, he’s not right, get a blood gas done”. And they were, “Oh no”, and he says, “He’s not right get a blood…” And he, he insisted on the blood gas and that’s how we knew he was in respiratory failure, was because the chest physio knew Jack. So I think a lot of it is if, they don’t listen, and I know we don’t know everything but I know my child and I know when he’s tired and I know 
 

Jack usually needs a stronger antibiotic to treat his infections. On one occasion when he was prescribed amoxicillin, his consultant said it was, “as useful as a chocolate teapot.”

Jack usually needs a stronger antibiotic to treat his infections. On one occasion when he was prescribed amoxicillin, his consultant said it was, “as useful as a chocolate teapot.”

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And, as I say, I’m not keen on them, if he does have a blood test and his CRP is less than 50 I’m not keen on them giving him antibiotics because I think he should be given to bite the bullet, if he’ snot showing any other clinical signs maybe other than sputum, you know, or whatever, then give him a chance to fight it off himself and build his own resistance up rather than just the first sign of anything is, we’ll give him antibiotics. And then a lot of the time they’re mis-prescribed anyway, so Jack has enterococcus water infection and she gave him amoxicillin and one of the consultants was like, “What is the point in that? As useful as a chocolate teapot”. So I’m a bit like, well, you know, if you’re going to give antibiotics it needs to be like a 21 day course to totally cover it. And I think a lot of the time they give you anti, they give you like a wide spectrum, so they might give you like amoxicillin or cefaclor for seven days or five days and it’s not going to do nothing with children like Jack who grow, who are known to grow, you know, quite resilient to bugs. 
 

Jack has complex medical needs and takes a low dose of antibiotics every day. His consultant reassured Michele that they were necessary.

Jack has complex medical needs and takes a low dose of antibiotics every day. His consultant reassured Michele that they were necessary.

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Yeah, because I think when it was explained to us that they were putting him on permanent antibiotics I was like, “Well, surely all the, what you hear in the news is that they don’t work if you take them and things” and they said, “No, because got chronic chest issues”. They sort of just help, keep, so if he’s having a bad day with secretions it’ll hopefully stop the bugs growing. And I think, you know, it has, it helped a lot. 

So I think I’m quite sensible really with antibiotics, I don’t think I’m one to go, “Oh, let’s start antibiotics straight away”.

OK.

I try and look at the bigger picture and see has he got a temperature? Does he look like he’s in pain? Because it’s a lot of guesswork as well because sometimes with Jack if he’s a little bit constipated he can go really flat and you think, “Ooh”, and then you’ve got to like think back, “Well, has he been to the toilet” and deal with that. So I try and deal with other things and then think, “No, he needs to switch over”. So I, but I do think the prophylactics have helped a lot at keeping him nice and steady.
 

Michelle thought flu was like having a cold until her son Jack became seriously ill.

Michelle thought flu was like having a cold until her son Jack became seriously ill.

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It was, yeah, I was just totally delusional about what the flu entailed, totally delusional. In fact, Jack didn’t even want you to breathe in the same room as him, because they said everything hurts, like your hair hurts and, you know, he had all trauma from nasal suction and it was just, it was awful, wouldn’t wish it on anybody to go through. I said, you know, and in the space of them like three days, you know, to, to see him be all right and then just to see him totally flat and, you know, it was just, it was just awful.

But, yeah, I didn’t have a clue what, how bad it was or, and I know the posters say Flu Kills and stuff but I think, I just thought that’d be for like elderly people, didn’t ever think it would affect, and I know Jack’s not like a healthy, normal child as such but he’d been really well for six months. You know, we’ve had no issues really so I just didn’t think it would be that. And I didn’t think it would be that bad. 

OK. So you have changed…

Oh definitely.

… your views

Definitely, definitely. And like that’s why I’m, make sure you get your flu jab. And make sure you get [laughs]…

[Laughs]

…because we all get it…

OK.

Anything you wish you had known from the beginning?

No. I think I was naïve because I didn’t know how serious the flu was. But I think at the beginning because I noticed that slight change in Jack, without knowing it was the flu, I took him to hospital. So we just seem to be, just happened to be in the right place at the right time. But now I know how serious the flu is, I think that’s like the main thing I take away, just to be vigilant. And if there is a slight change in his condition I’m very aware of it now, and I would be prepared to go and sit in A&E for four hours and come home if they go, “Yeah, it’s fine”. But I wouldn’t take that chance anymore.
 

Michelle knows that Jack’s condition is unusual but wishes doctors would use the right words to describe the features of his illness

Michelle knows that Jack’s condition is unusual but wishes doctors would use the right words to describe the features of his illness

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And is there anything you would like to say to health professionals, looking after these children with …?

Yeah, I would say [child noises] learn from your peers who not even like more knowledgeable and experienced but, you know, just listen and look at the bigger picture and look at your patient. Don’t look at a piece of paper, look at your patient, and treat your patient not a hospital number, not a diagnosis, treat your patient as a whole, not as a diagnosis. If that makes sense, because a lot of people, I mean, we’ve been in A&E and people have, because his condition’s so rare, and they’ve Googled it. And then come over and spoke to me about it, and they call them fits and it winds me up because they’re seizures [laughs]. And I think that’s it, just listen to, and listen to the parents… you know, and listen to other members of staff. Listen to each other. I think that’s a big massive thing, is just listen and take on board what everybody’s got to say. 
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