5 year old open heart surgery - any experience?

[SellMySoulForMoreSleep]

Hello everyone,
I wondered if anyone has any experience of their young child having open heart surgery? My 5 year old boy has a large hole in his heart which can not be repaired through keyhole surgery so he is having an open heart operation at Great Ormond Street in October. I am generally ok about this, it is a straightforward operation (as far as open heart surgery goes!) and he is in a brilliant place with brilliant doctors etc. As the date gets closer I am starting to feel more anxious about it (I am quite anxious about a lot of things) and I just wondered if anyone has any experience of this and can offer any reassurance or even advice? Thanks.

Hi OP,
Sorry your son is going through this. My 7yrold had OHS in April. He bounced back pretty well but it took him a good 6 weeks to be back to normal. He was only in hospital for 4 days but off school for 4 weeks and did half days for another two weeks.
He doesn't remember the op or the time on HDU afterwards. I was shocked at how tired he was immediately afterwards, but taking it easy and lots of TLC helped.
I hope it goes well for your boy. I found that at 5 ds was a lot more unaware and less nervous of hospitals and Drs than he is now. GOSH are great and have brilliant play workers on the wards to keep the kidsoccupied.
It's horrible waiting for An operation and thinking about all the scenarios, but the Drs are amazing and the nursing care we have had has been brilliant. I remember bursting into tears being shown round the HDU and the staff were very kind and reassuring.

Thanks so much for replying Hackney, very kind of you. I burst into tears when we were told they would stop his heart to carry out the surgery and we're being shown around on 25th August so fairly sure it will be pretty emotional then too. DS is aware that he is having an operation but not fearful so I guess that is an advantage of being 5 rather than 7 (I have a 7 year old too, he would definitely be more scared). Knowing about timescale is really useful too, they have said just 2 weeks at GOSH, one for op and in hospital then one at home but I did think that sounded quick. I'm glad everything went went well with your son, it helps to know others who have been through it. Thanks again.

I think the time scales are vague, DS had a thoracotomy last year and recovery time was meant to be four weeks and he was back at school 8 days after his operation, he had to take it easy, but he wasn't in pain or particularly tired. OHS was a lot bigger and he had an unusual procedure, so I think, for him, recovery time was longer. The consultant just told us to see how he was and take his lead.
Its difficult having to watch your child go through major surgery, but DS always amazes me at how stoic and resilient he is. When he talks about his operation now he just refers to 'The time he had a sleepover at the hospital and everyone gave him lots of lego.'
If you are feeling anxious (I was) it might help to write down all the questions you have and the things you are worried about, just to take along to the consultant. The hospital we were at this time had a specialist family liason nurse and we had a number we could ring her directly on if we had a questions. This was super helpful for me as I felt more reassured when I knew all the details.
Have some fun stuff planned for after surgery when he's home so there's something positive to focus on. I took a laptop with me to hospital and distracted myself with crappy Netflix series whiles DS was recovering after surgery and just sleeping. I thinks its hard not to be anxious, but he'll be in the hands of experts.

My daughter had open heart surgery when she was nearly 2, she has Fallot's Tetralogy and will need more surgery in the not too distant future.

From memory she was in hospital for nearly 2 weeks, ICU/HDU for 5/6 days, had issues with pleural effusion, both lungs collapsed.

She's now a healthy 12 year old and hopefully only one more heart surgery to go.

Posted too early!
Take a kindle or iPad with you - I've spent many an hour sitting next to a sleeping child! These are essential.

You won't get to sleep beside him when he's in ICU, have you sorted accommodation?

Take food with you, it's hard to tear yourself away sometimes and you need to eat too.

Hope he's ok, he's in great hands, best wishes.

DS had OHS at 5 months. He was in hospital for only 10 days. I'm happy to share my experience with you but I'm guessing you will have a different set of challenges with your son being older. Thinking of you, I remember the frightened feeling only too well x

Hi there
I do! My son (5 now) had OHS last July in the Evelina in London for a similar issue to yours - a hole but also a leaking valve.

I was utterly beside myself until we got there on the day. It doesn't seem possible but it's so routine to the staff that I was immediately reassured.

He was treated like a king and we were incredibly well looked after too. He had surgery on Thursday morning, was finished by about 1 and only spent 2 hours in ICU. He was on the ward that night and we were home on the Sunday! You will be AMAZED.

I was worried he would be somehow changed by the experience but he's not at all! He started school 6 weeks to the day after his surgery.

I am more than happy to give you any more info you need and answer any questions and try to reassure you. I know it's terrifying (understatement) but you will come through! Xxx

Thank you all for replying, very reassuring.

We're at GOSH so we both get accommodation while he is in ICU I think, I'll find out for sure on Friday. Great tips about the entertainment etc and food, I'll remember to bring some.

I'm glad it worked out well for all of your children, it's such a shock finding out they have something which needs such a big procedure, but like you say it is so routine for the hospitals, they deal with it all the time. I might come back after Friday if I have anymore questions but thank you all for taking the time to reply, it really helps hearing from people who have actually been through it!

The shock is horrendous! My son was completely without symptoms, is huge and thriving and had no sign whatsoever!

Another tip: it's REALY HOT in there! Take thin clothes! And flip flops. And one of those Evian face sprays!

All will be well xx

Thanks for your post, I could have written it myself except my son is due to have his surgery on 6 September at GOSH. Good luck on Friday, we don't have our induction until the day before so I'd be interested to hear how it goes. Thanks to everyone else for their experience, I find the doctors so vague when you ask about recovery time x

My son had a different OHS as a baby. It was deeply scary but the care was excellent. He had a week in ICU then a few days in the ward, less than 2 weeks in hospital overall. He came home with meds for a further 4 weeks and was himself after 2-3 weeks. I echo that it's hot, take sandals and thin clothes for yourself and shorts for him. I read crappy magazines and mumsnet, mostly. Couldn't concentrate on anything else. Friends visited with fresh food on one day, which was bliss!

I wish your son all the best Sethsmum for 6 September, I expect we'll be about a month behind you so do please keep in touch and let us know how it all goes. I'll report back over the weekend about how tomorrow goes, I'm sure it will be fine. Thanks so much for the useful advice, I had a vague flashback to how hot it was in the maternity ward when I was in with DS1 for a few days after delivery. Thanks everyone again for taking the time to share your experiences, I do find it reassuring.

Hi Sellmysoul

How did Friday go?

Been thinking of you lots x

Hi Sethsmum, thanks for reminding me. It was good (and a little bit scary!). Good because they talked us through it all again and a little bit scary because once you know all the detail it's just that bit more real. I felt very confident in the staff, they really know what they are doing. The bit I am dreading is first seeing him in intensive care after the operation. They warned us that he will look very pale (he is already extremely pale so goodness knows what he will look like) and he'll be cold as they keep the temperature low in the operating room. He also might be puffy from the fluid they use in the op. There will be a lot of wires. I know he needs to have the operation and it's obviously really important but when they start to actually go into this sort of detail I get very anxious. But the day itself was good, very informative.

Are you travelling far for this? Will you stay over at the hospital the night before? Because we are based in London we'll be asked to come in on the day of the operation, either at 7.30 or 10.

Also they are hopeful they can 'fast track' Jack which will means he won't have to spend the night in intensive care. His surgery has been scheduled for 3 October so we are pretty much a month after your son. How are you feeling about it all?

My son has had loads of heart surgeries and been in ICU more than a few times... The best thing to do when you see them first is to try and look past all the wires, tubes etc and just see your child..take your time and breathe and within a few seconds that first bit of shock will quickly pass and you will just be relieved to hold their hands/ touch a foot/ whatever part you can get near... Another trick I was taught was to take a couple of 'happy' pictures with you and blu tack them to their bed/wall just above their heads.. It helps you focus on were you are heading and all the nurses always say they really appreciate seeing the 'well' child when they are looking after them.. I used the same idea with an elderly relative recently and her consultant cane to find me on ward to say he thought it was a great idea and he was going to suggest the nurses encourage other families to do same from now on..everyone who came in commented on it.. I normally take a nice up to date posed school photo and then a relaxed one with him doing a favourite activity..
All the very best to both your boys... My boy is now a teenager.. It's been a hard road but you will get through it...
P.s my kids all like to look at photos taken in the hospital including ICU ones..I took quite a few and he always looks at them after he is better..I think it helps him emotionally process what he has been through.. I don't like looking at them but kids still do from time to time..

My daughter had OHS 2 years ago when she was 5 for a sub aortic stenosis. It was very scary, seeing her being put to sleep, them telling us they were going to stop her heart and the risk of her dying (only 1% but that was the part that scared me most).

She bounced back. She was in ICU for less than 24 hrs, she was up playing in the play room the day after she got out of ICU. She did have to be sedated for getting her chest drain and her pacing wires removed because she wouldn't let the doctors near her again afterwards but she didn't remember once she was sedated.

She was out of hospital within 5 days. It was summer holidays so she got the all clear to go back to school the week before it started. She just had to take it easy at yard time.

I wish you well, if you have any more questions don't hesitate to ask.

Hi Sellmysoul
we went in on Monday, did all the pre-op tests and then were told that the operation had been cancelled! so we have to go back on 20 September :(
We don't have too come too far, just Essex, but it's outside the 35 miles so we get parent accommodation. The good news is he's been able to go back to school this week with all his friends, I was really worried about him missing the first week and feeling like the new boy :)

Madcatlady
I love the pictures idea - now at least I have time to do that!

Oh no Seth's mum! How frustrating! We were called today to say they have moved our DS's op to 7th October, from 3rd so not too much but still a bit frustrating. I hope your son gets to have it next week, I'll be thinking about you.

Been thinking about you today Seth's mum, did he have the op? Do let us know if you get a chance, I appreciate Mumsnet isn't going to be the first thing you're thinking about right now! Lots of love to you and your son

Hi Sellmysoul, just wanted to update you :) Seth's surgery went really well, he went in about 12 o'clock and at 5pm we were allowed into ICU to see him, it was pretty scary as he still had a lot of tubes which he kept trying to pull out. At 7.30 they took his breathing tube out and he was then breathing on his own. He kept waking up and asking for a drink but they wouldn't let him have anything for 4 hours. This was probably the hardest part for me as it seemed like time slowed right down. At 7am they said he could be moved down to Bear and at 8am they moved him from ICU to the HDU ward on Bear. That day was pretty uneventful as he slept for most of it and at 4pm they moved him into his own room on Bear. The next day he started moving around and was desperate to come home! He had a really good night and on the Sunday he was discharged to come home, it's now 1 week later and you really can't tell he had major surgery recently :)

Wow, how amazing Seth's mum, he looks brilliant! Well done to you, as time gets closer I am getting more and more anxious but seeing this has really helped, thank you so much! I'm so pleased it all went well. Xxxx

Hi Sellmysoul

Have you heard of Pyjamafairies? They made the pyjamas that Seth is wearing in the photo, they open up so that the doctors can easily look at the
wound. You need about two weeks so it might be too late for you to order some but I'm happy to leave Seth's at GOSH today if you would like them?

Oh wow Seth's mum, that would be brilliant, thank you. Let me know where to pick them up from. Getting anxious now, roll on Friday night!! Thanks again, so kind of you. x

Left them at reception on Walrus, think she thought I was a bit mad as I didn't know your son's name! Will be thinking of you on Friday xx