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Parents of children with congenital heart disease

Moving to the ward

As children recover from their operation, they progress from the paediatric intensive care unit to the high dependency unit of the ward and then to the cardiac ward. In paediatric intensive care, children have one to one, twenty-four hour specialist nursing care. On the ward, nurses care for more than one child.

Some parents found leaving the intensive care environment stressful because they were worried that their child might not get the attention they needed. One couple explain that although they were relieved that their child was getting better, they felt less secure about leaving him for short spells when he was on the ward.

 

Describe moving from a one to one intensive care environment to the high dependency unit of the...

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Age at interview: 3
Sex: Male
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Mother' I think the difficult part is as they start, start to improve, is when they say 'Oh we'll now move them back onto the ward'. And in one respect you think 'Oh this is great, it's a positive step that they're going back onto the ward. He must be getting better'. But in another way you're not in a hurry to get back onto the ward because you realise that once you're back on the ward there's a greater ratio of patients to, there's, there's more patients for each nurse to look after. There's not one-to-one is there? And you lose that sense of security. I think we felt more inclined to be able to leave him - didn't we? - on intensive care for short spells.

Father' Yes not that we often did...

Mother' Not that we often did but I think I felt more secure coming away for a cup of coffee or whatever than I did on the ward because on the ward there's a lot going on.  You've got visitors in and out all the time and you're having to answer the door buzzer, you've got phones ringing [um] and you know, you've got a lot of young babies that all need feeding at the same time and you just feel that if something does go wrong there's not that same security there. it's, it's a big transition, isn't it  [Father' Hmm]. But I think parents...

Father'  You're going from being hooked up and leads and monitors and tubes everywhere and all sorts of readings and the nurse sat at the bottom of your table to moving back to the high dependency unit of ward but a lot of the tubes and machines have gone [Mother' It's'] it is, it's a mixed emotion though generally it's, it's a positive one because you think 'Well, we're heading in the right direction...'

Mother' 'Cos you know you're going in the right direction...

Father' But there's also that worry that if that well if something happens is it going to be noticed.

Another describes what it was like on the children's ward and recall that they lost all sense of normality when they stayed there with their son for eight days. One mother commented that that they let her use the phone on the ward to update her husband about their baby's progress while he was at home looking after their other child. Another couple mentioned that the days could be quite long and it was useful to take something to occupy themselves while their child was sleeping.

 

Describes what it was like on the ward.

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Age at interview: 3
Sex: Male
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Father' But it's, it's a, it's a strange environment being on a children's ward like that because there are so many monitors [Mother' Hmm] you know, that, so many monitors in each of the wards, or each of the rooms there's like half a dozen nurses. You can understand why they do call you, you know, to come and look at your child during the night because they've got more important things to do than sit and maybe cuddle a, a baby for half an hour for when it's awake. You know, they do do that when they, when they've got the time, they, they will sit and nurse a baby just cradling it. But it is a strange environment, isn't it?  With all the monitors going off, bleeping and...

Mother'You, when you're in hospital you totally forget about the outside world and probably more so because it's a children's ward if ever there's a telly on it's on Thomas the Tank Engine or you know something like that. So you don't even hear any news and you know we were in there I think for 8 days weren't we [Father' Hmm] and the outside world just ceased to exist. We, I think we walked along the King's Road once or twice, you know, just for some fresh air but...

Father' When we came home there were loads of things that had happened, I can't remember what they were, but loads of things that had happened in that week, you know, and we hadn't got a clue what was going on. We were...

Mother' You forget, you know, you forget that, you know, your work mates are still at work doing work and other people you know it just, you're just in there in hospital and that's your little world.

Father' Your own little cocoon, isn't it?

When children move from intensive care to the high dependency ward, parents become more involved in their child's care. Some of the drains and drips had been removed and parents said they could feed and hold their child. One couple recalled that they had expected their baby to look better when he was moved to the ward and were distressed to find he looked worse because he was being weaned off morphine. Another mother said her son was very spaced out while he was on morphine.

 

Explains how she became more involved in her baby's care when he moved to the ward.

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Age at interview: 7
Sex: Male
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You had very dedicated care in Intensive Care. Always there was one nurse, at least one nurse continually with your child. And it felt very safe. And when we went back to the ward atmosphere it was different because we were sharing the nurses amongst the other babies and also you were a lot more involved in the care of your child. He no, he was no longer on the machines, on the drips. He just, he was attached to a nasal, a nasal-gastric tube but we then became very much more involved in their care. The nappy changing, the feeding, the cuddling.  And it was, it was very strange to me because for the first 12 days I'd just had a baby who'd. who'd lain on the bed and not done anything and it, it was very easy really. And suddenly I was thrown into, thrown into an environment of lots of babies, crying babies and my own baby that, my goodness, I had to take care of. That was very scary.

The nurses were wonderful and they'd spent a lot of time with you but obviously they had, they had the other babies and parents to care for as well. So it was quite a, it was quite a, quite a sea change that was, coming back from Intensive Care back to the ward again.  
 

They were expecting their baby to be looking better when he was moved on to the ward and were...

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Age at interview: 1
Sex: Male
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Mother' I mean, initially he's on intensive care and then they move him to a high dependency ward. So, which is basically when he's off the ventilator isn't it. And he was on, I think he was on intensive care for 24 hours, maybe not quite that long.  Then they moved him overnight I think into the high dependency. And then he was back on the main ward and strangely enough it was the day he moved back on to the main ward that I got, he, that was day three post-op and that's when he, who, to me looked his worst [Father' Worst] because he, they were starting to wean him off the morphine and he just looked like a drug addict. It was awful. He, he, they, you know, we sort of, they said, 'Oh, you know, he's moved back onto, onto his ward'. So I kind of went up expecting to see my little boy no tubes, nothing and there he was wrapped in a blanket just look, looking shocked and sort of his eyes were all, you know, and, [Father' sort of...] I wasn't really prepared for that actually and I think maybe if somebody had warned me I would have been less distressed by it. 'Cos I just kept saying 'He just doesn't look...'. It didn't look like Joshua, it really didn't.

Father' He looked like he was going to be stealing other people's teddy bears and selling them [Mother' Yes] to raise cash for his, his morphine habit.

Mother' He, it really didn't look like him at all. But...

During surgery, 'pacing wires' are attached to the heart so that should a child's regular heartbeat change after surgery it can be returned to normal. After about five days, pacing wires are normally removed. One couple explain that they asked for their son to be sedated when the pacing wires were removed. Another said the consultant pulled their son's wires out while he was on the ward, which had been fine. One mother felt that her two and a half year old daughter was upset when the wires were removed because she was getting tired of having things done to her.

 

They asked for their son to be sedated when he had his pacing wires removed after his operation.

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Age at interview: 5
Sex: Male
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And the pacers, how are they removed?

Mother' They just pull them out. [Father' Yeah] They just actually pull them [Father' Yeah] off. It only takes seconds.

Father' Yeah, I mean, it was just uncomfortable but it wasn't sore or nothing.

Mother' No it was, it was a little bit stingy [Father' Yeah] for a few seconds. We actually got him sedated a little bit because we know what he's like now. He just gets too upset because he doesn't fully understand it's not really going to hurt.

Father' He doesn't trust them, aye. [Mother' No] It's as simple as that.

Mother' So we got him sedated. He wasn't sedated, he hadn't been and had the, the solution for long enough when they took him in. But what had actually happened was after he came out they, they wire him up to a machine for a little while to check the saturations and everything, just to make sure they're OK and whilst he was sitting there, he says 'When do I have to go and get this done?' I says, 'You've had it done?' But because the sedation didn't work enough when he went in [Father' Hmm] he'd actually forgot about it after it had been done. [Father' Yeah]. So, in a sense it was, it was quite good. He'd been through it, it was a bit stingy and a bit nippy but about 5 minutes later he couldn't remember 'cos that's what the sedation's for. So he still thought he had to go through it but he had, I told him to have a look at himself and there was nothing on him so.

Children tend to recover very quickly after heart surgery. Several parents had been amazed how fast their child had recovered. One mother remembered that the morning after her son's open heart surgery he was sitting up in bed eating toast, was moved to the ward later that day and the following day he was in the playroom. One couple could take their baby out for a walk in his pushchair.

 

Describe the quick recovery of their son and of other children on the ward after their open-heart...

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Age at interview: 3
Sex: Male
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Mother' Another thing that just totally amazed me 'cos he, he had the operation on Tuesday and was in intensive care. Then in the high dependency on Wednesday and then back on the ward on Thursday and when he was on the ward they were giving him his medicine, and they were giving him Calpol and I'm saying, 'hang on a minute, this child's just had his chest cut open, he, surely he needs morphine or something like that'. And they said to me 'Well, is he in any distress?' And he wasn't, he was, for sort of all the time we were in hospital, which was a week, he wouldn't go onto his chest because he'd been crawling before that, hadn't he? [Father' Hmm] And he wouldn't, he, he obviously hurt but not really to the point where, you know, he, he was never in distress. And we were just totally amazed really and, so we brought him home like the, the following Tuesday and he was practically normal from then really. I mean you just had to let the, the scar heal. They had a dressing on it for a day and then just left it open and then just, you know it was, [Father' 'cos] as if he had cut his finger or something [Father' Yeah] it was...

Father' The, the ward adjoining the children's ward was adults having similar sort of operations, for other things maybe but similar operations and it just made me laugh that these adults that knew everything that was going on were really 'Oh I do feel sorry for myself'.

Mother' They were milking it.

Father' And there were children in there [Mother' Yeah] that had had open heart surgery two days before [Mother' Yeah] they were running around, playing, they were in the children's play area [Mother' Yeah] Not a problem, you know. They, they were carrying on as if nothing had happened. They really were, two days after [Mother' Yeah] they'd had their operation. And these other people, middle aged people going 'Oh, dear I do feel sorry for myself'.

Mother' The, the surgeons obviously did a good job because two weeks afterwards when he was at home his three-year-old brother stood on his chest. Do you remember? And [my husband] sort of came in and he saw him standing on him and he thought that his chest would have burst open or whatever. But nothing. He, he...

Father' I couldn't believe my eyes.

Mother' He was quite, the rate of recovery and everything like that is just incredible. He just, he got over it so quickly. If anyone could have told us that, you know, it's, it's this huge surgery which I'm sure I'd be off work for a year if I had that done, you know. And he was...

Father' Well that's, that's the only thing that you've got. You think 'Well if I had it done, you know, how, it would be months before I felt right again' [Mother' Yeah] and you see these children 48 hours later and they're running around [Mother' Yeah] and they, the...

Mo

Sometimes post operative complications can delay recovery. Parents had been distressed by setbacks and a return to intensive care when they thought their child was progressing.

Several parents mentioned that for a time after the operation their child was said to have fluid around the heart. One mother said that her son needed to stay in hospital an extra day and return for a follow up appointment after a few days because the fluid was not clearing as fast as it should. Another explained that her daughter had a stomach bleed caused by the painkillers she was on, and that this had delayed her discharge from hospital by a couple of days.

 

Describe the delay in returning home because of fluid around their son's heart after his open...

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Age at interview: 4
Sex: Male
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Mother' I think it was the Saturday, and I think it was [Father' Yeah] yeah, [Father' Yeah] and I was 'Wow, wow, that's fantastic'. Obviously doing fantastically well and then...

Father' So you were packed and ready to go.

Mother' Yeah, I was, run out of clothes. I can't remember quite what happened then but they needed to do a chest x-ray because of all the fluid that was coming out they needed to check and of course this cough and it showed that some fluid had, there was still quite a bit round the heart so we had another scan on the Monday and, with our consultant and he said 'No there's a little bit there I'm not too happy about, just give another day'. So I was upset by that and he was doing very, very well. And on the Tuesday we had another one and it was still there but we couldn't, it was by the senior registrar.  Obviously they confer a lot but I think they perhaps had different, different opinions on how we should go with is because we live in, over here and it was quite a trek back and forth to the hospital and in the end they decided [my son] and I, my son and I walked all the way round the hospital, so quite a long way, slowly, it took us about an hour, we walked all the way round the hospital.  And just to kill some time really and, he said 'We're not going home, are we mummy?' and I said 'No I don't think so, I think it might have to be tomorrow now'.  

Anyway our consultant and our senior registrar decided that there was no point scanning each day. They obviously accepted that I was quite a sensible mummy because they said if, 'You know what to look, we explained it all to you, we're going to let you go home but you have to come back on Friday for a scan'. And I said 'That's fantastic. I mean, no problem'. But just, [Father'Yeah] by then it was our daughter as well and I think, 'Well he's fine, he's sort of like taking up a bed and doesn't need to'. Because they had, everything else was OK, there was just this bit of fluid which builds up around the heart after an operation and it wasn't draining quite as quickly as, as it should have been. Of course the drain had then come out and it had all been sealed up.


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Last reviewed July 2018.

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