Mother’When she first came home from hospital, she was on a lot of medications for various different things to do with her heart problem. And it’s a bit of a trauma at first isn’t it. It’s just like she was on six syringes in the morning, and in the afternoon, and teatime. It was like do this, do that and do the other. Which I didn’t find too bad, I mean, when she was a baby, she used to not like the syringes at all, but shes seems OK with them now.

Father’Shes older now. I think she realises that it doesn’t matter how much shell moan and kick or whatever, she has to have them, and then now she just takes… I think shes realised the quicker she has it the quicker it’s done and gets over it.

Mother’Weve had a couple of traumas haven’t we, which we will be honest about. Some of her medications were in very, very similar bottles, and you know we, her medicines got administered the same, she had the same one instead of different ones. It was like such a trauma, what [are] we going to do. We phoned the hospital, and they said, don’t panic, bring her up well keep an eye on her and things like that. It’s like well, lifes difficult as it is, you know, but it doesn’t matter how much you try, these things happen and they tell us that this is normal, don’t stress yourself out don’t feel so guilty about doing it, it’s just one of those things. Shes on that much medicine, but it happens, and I’m sure it’ll happen again. But you know, shes not on so much now is she. It’s nice.

Father’I think it’s all about organising yourself. When you first sort of get home and theres all these medicines it’s quite daunting.

Mother’It is.

Father’And you’re sort of right, this is what well do. And you sort of eventually, it’s just like, it’s second nature to pick up syringes, fill them up and give them your daughter. Although I mean like I suppose with most children when they come out of hospital we had quite a bit of medicine. But as they go back into outpatients and they slowly reduce and it gets easier.

We started to make two bottles up for her feed and in one bottle wed put an ounce of milk and the medication and then if she didn’t finish the rest of the feed it didn’t matter, shed had her medication first. And, but then we just plan now around mealtimes. The medication sits around the meal times now. It was difficult though and I think it’s just something you just cope, go through. I remember holding her screaming in one hand because she wanted her milk, as a very young baby, trying to get the syringe and the bottle and the bottle smashed on the floor. Which doesn’t sound too horrendous but this specialist medicine had to be ordered three weeks in advance from a specialist hospital so we did have our moments. But the problems just had to sort themselves out and they had to fit around us as well. I always feel that if I’ve forgotten her medication and were out having a good time, say a picnic, I miss the medication. I’ve been told that it’s OK, that she won’t come to any harm if she misses one. I feel that it’s important that she has a normal life and we don’t live around the medication. It’s got to fit in with us to a certain degree.

And it’s this awful sort of thing, where, you know, you’ve got this battle to try and get a feed down him and then you’re trying to pick the right moment to give him his medicine, you know so that hes not going to be sick. And you manage to get some feed down him then you manage to get the medicine down him and then hes violently sick and you think all that’s all gone, its all wasted really. But that’s how it was and it was just this battle really to sort of try and get the timing right and at one time, I think he was on 13 lots of medicine a day, at one time;

You know, you have to write everything down and just the whole day, it’s on your mind, right I’ve got this, I have to do that, you know and planning out when you are going to try and do it and fitting it in between feeds of other babies and toddlers, and cooking and cleaning and nappy changing, and you know, trying to fit it all in, it’s hard. But, you do do it, somehow you get through it but he did have a lot of sickness. Sometimes you’d think, well hes had his medicine but hes been sick, do I give it to him again. And sometimes it meant phone calls to the hospital to check, you know, well hes had this but hes just been sick, do I do it again or do I leave it until tomorrow or ’til the next dose? And again with the medicine, you do tend to think, my god, is this it, you know, is there ever go to be an end to this. It’s just this sort of battle, he didn’t want it, hed scream, hed fight, you know, hes pushing it away and you know, you think well, what do I do? do I literally shove it down his throat or do I leave it for now and come back later, you know. But you do get used to it and you get better at doing it and now he does it himself. I put it in the syringe and he, he actually comes out and sort of practically asks me, wheres my medicine, then? I mean, now hes just on, hes on warfarin now and still on the penicillin. I mean in between times, hes been on various other things for you know, he suffered quite a bit with urine infections at one time. So he was on medicine for that, trimethoprim. But that at the moment, touch wood, seems to be OK, so they’ve taken him off of the trimethoprim so hes just on the penicillin and the warfarin and that’s just once a day. So we just have that sort of before bedtime, really;

And as I say, now he just takes the syringe off me and he does it himself and he thinks hes very clever, you know. We have great fun because he likes to sit on the worktop and then try and throw the syringes into the bowl and it’s all great fun;

Mother;Well as soon as you get him, sort of tuck one arm under here and have the syringe, hell start crying. But he has sussed that when he cries, he gets it and he will now cry with his mouth closed. Ooh. [Father;Laugh] Just recently you had he had a high temperature and he had some antibiotics for it and we just, we had to hold his nose, didn’t we;

Father;Hmm. So hell have to open his mout;

Mother;So hell have to open his mouth because he would just, he was crying but he was keeping his mouth closed.

Father;The old fashioned way, we had to squeeze his nose.

Mother;Yeah and when there was two of us it was OK. When there was just one of you, it was really, really difficult and like his brother had to hold his hand so he couldn’t reach and get up and weve had I’ve been covered in medicine before where you squirted it in and he blaah, you know, spat it back at you and so because of all the early experiences. I mean, his brother is absolutely perfect isn’t he? You know he would take any medicine, would take it on a spoon or whatever but he just, he would probably always hate it I, I think.

Father;It’s because it was forced upon him for such a long time.

And the times he was on diuretics he didn’t like the taste of them but he knew that if he didn’t have them hed be poorly. I was always really straight with him. I used to say ‘Look if you don’t have this medicine you’ll be really poorly and we don’t want that, do we?’ And he said ‘No, I’ll have it. And a tut and a sigh hed have it. Occasionally hed run away but that was more to make a game rather than because he didn’t want it. Hed go and hide in the porch and say ‘You can’t find me. And it’s like I’d go in and hed, gave his medicine. And his cousins used to like help him. If the cousins was here and it was medicine time they used to watch me prepare his medicine and they used to like help, play nurse and give him his medicine as well. So we just used to try and make it as fun as possible. And as quick as possible and I used to say ‘The sooner you have your medicine, the sooner you’ll get better’ or whatever;

And the antibiotics, he never used to complain because he knew that he felt so poorly; We always used to say, ‘If you have your medicine you’ll feel much better and that’s what we want. So we always tried to be positive. And you never heard me say ‘Oh well that medicine tastes disgusting. It was always ‘Oh that’s a yummy medicine. It’s like, perhaps we was kidding him, I don’t know. It worked;

Is there any advice you’d give to other parents about medication?

About medication? Try and get it over and done with as quick as possible. Be light-hearted about it. Don’t get stressed about it because your stress’ll just rub off on the children. And try and make it into a game if necessary. We used to give the teddy bear some medicine, pretend medicine. I’ve seen the time I’ve put water in a syringe for Luke to give his teddy bears. Because that’s what ‘Oh my teddy’s not very well. They want some medicine. So, it doesn’t hurt, sort of a bit of plain water in a syringe. Try and make it fun and I’m sure that it does work. And be light-hearted. But you’ve got to be firm as well.

Because the amiodarone, I don’t know if it’s not commonly used with children but it isn’t available. It’s available in tablet form or injection form but not in a liquid. So it had to be specially made. So the hospital done that and then the chemist next to my GP sent off, he used to get it made.

But it only has a shelf life of 28 days so it’s a daily medicine. You can’t miss one and every 28 days you have to get a new one. It has to be kept in the fridge; I mean, I think the medicine has probably been the most stressful thing over the last year than anything else. Just because theres always a problem in, because it only has a shelf life of 28 days I used to put in the repeat prescription and they needed 4 days to get the medicine and there was always a problem.

I think last Christmas, the day before Christmas Eve the chemist had rung us to say the medicines in. Wed gone to pick the medicine up, the medicine wasn’t in. Then they were saying ‘We can’t get it, were closing for Christmas. And I was like, ‘Well I need it. You know, I can’t just not give it to him for a couple of days because everywheres shut, I need to give it to him. But then the hospital were brilliant because I rung the hospital and my doctor, Jack’s under two doctors, a cardiology doctor and a paediatrician and, one of the doctors just said, ‘well that’s stupid, come here and he sorted it out at the hospital for me. Very, yeah, very stressful but at least it was made into medicine.

It’s not so hard to cope with the warfarin at all. Not nice that hes got to take it but then again that comes part and parcel of Daniel. Basically it just thins his blood. Obviously if he has a severe knock we have to take him into casualty to make sure theres not sort of excessive bleeding underneath the skin but, you know a really bad knock, not a bump on the head falling over. I mean, you obviously use your judgement in that way. If he cuts himself we have to make sure that the bleeding stops but again judgement’s used. If it’s sort of a cut on, outside he grazes his knee that’s not going to need medical attention but if we was to fall on glass and really wound himself then wed have to have that looked at. If he has antibiotics, that alters his warfarin. We have to get that checked straight away because the antibiotics messes with the warfarin. I don’t know how, but his dosage will have to be monitored then. And that’s basically it, really to be honest. Any bad knocks, hes not supposed to play sort of contact sports that sort of thing while, because hes on warfarin because any severe knock can be well, fatal really, but I have to say I’m not fazed by his warfarin at all.