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.

Just wanted to say my son had OHS at 6 weeks to fix a large VSD, a small ASD and a leaking valve. Obviously a different age, but he was home a week after his op. He had 3 days after his op on PICU and then a few days on the ward to get his strength up and then he was ready to come home. Hard to say how long his recovery lasted, but he got stronger each day and was able to drink on his own after a week of coming home.

We took home a very different baby. He was much livelier, had a bit of colour and a much lower respiratory rate.

You should get some advice on what you can't do after surgery for a while. A BIG no-no is picking your child up underneath the arm pits for example.

I hope his op goes well and also good to see Seth's op went well too sethsmum

Thank you for sharing that foxyfemke, that must have been so hard when your baby was so little. You must have been so brave. I'll make sure to ask about aftercare, thank you again xx

Thinking of you today x

Hope it went well today and it must be a relief it's done.

Hello, thank you for all the lovely thoughts, sadly we got cancelled at the last minute for an emergency with a baby. Being thankful that our DS's case is not an emergency but obviously still anxious and would like to get it over with now. We should have a new date early next week.

so sorry to hear that! as you say need to be grateful it's not an emergency and that they are bigger but it's so demoralising, keep strong xx

Do you have a new date yet? They still won't let Seth back to school :(

We do! 27th oct, so a week on Thursday (fingers crossed). Why won't they let him back? How long has it been?

4 weeks today :)
Doctor says he can go back if the school will make provisions (no unsupervised play time) school says they won't have him back until doctor says he is completely healed, complete chicken and egg!
Got our follow up on Monday so I'm hoping that she'll say he can go back after half term, but he broke up from school on the 8th of July and won't be back until the 7th of November so it is 4 months!!!

Thank you all for this, I am pregnant with a baby that is looking likely to need heart surgery from a few days old, this has made such a difference to me reading how well your children are. I hope they all recover quickly, also going to GOSH x

Toocold, what a worry. When my son was in hospital there were babies in there as well who needed ops within the first few days/weeks. Some were in longer than others, depending on the kind of procedure.

My son's op at 6 weeks changed his life, the difference was instant. Your baby will be in the best of hands and my advice is to go with the flow. A start in hospital is very different (my son was admitted at an hour old and came out after a month, only to go back two weeks later for his op) and don't feel bad for asking for help for you. I assume the hospital will offer some kind of pastoral care and if you feel you need it, ask for it. We had a child developmental worker work with us getting to know our baby, as you spend less time learning all the cues, their behaviour, etc. and it was really helpful.

Good luck to you, I'm sure it will all be fine and you are stronger than you've ever thought you would be. People always tell me how much they admired how we coped, but quite frankly falling apart isn't an option when you're going through it. The falling apart came later for us, and it still hits me at time, and my son is almost 19 months now.

Thank you Foxy, sadly this isn't the first time I've done this with a newborn, my dd has an operation at 2 days old, ( she's now 11 entirely different operation) so I know some of what to expect, but it's the heart so it's an entirely different worry, which is odd as bad my dd not been treated it would have been fatal. I totally get you on the falling apart bit, I had pnd when my son was born ( he is fine) due I think to flashbacks. I'm a bit stunned that two rare non connecting things have happened to us twice and trying to be prepared as possible practically for us and keep things normal for the children. How is your son now?

Please ignore the rogue bad... Maybe an indication of how rubbish this all is?!

Incidentally, in case it helps you, I rarely think about the time we had in hospital now my dd is older, she is fine now a normal typical preteen, it's come back a bit due to what we are going through but the pain and shock of it all has lessened but when she was younger a lot of the usual advise was not applicable to us and that was hard as I'm sure you've found and not many people can relate to what you've been through.

Toocold, I'm so sorry to hear about your baby, you will be in the best hands. I saw a little baby just today at GOSH, the parents looked relaxed but obviously worried, we had a chat, they were lovely. I wish you well.

Sethsmum, I picked up the PJ's finally today, they are fabulous, thank you so much. We had bloods done today and are scheduled for surgery at 7.30am tomorrow so all being well this time tomorrow I'll hopefully feel a lot happier.

Sell How did it go today?

Toocold, that's a lot to deal with. My son is absolutely fine now, thank you for asking, you'd never guess apart from the massive scar on his chest.

Sell, I hope today went well for you all. Thanks Foxy.

Hey, thank you all for the messages. The operation went really well and we are at home already! He spent one night in intensive care and one night on the ward and then we were discharged, amazing. He's doing fine, it's such a relief! Sethsmum, do PM me your address and I'll send the pjs back to you! Thanks again, they were brilliant!

Glad to hear it went well. DD has spent a lot of time in hospital and I know how worrying it is.

I'm really glad your son's surgery went welll. I had this surgery too many years ago. My tips would be to remember that your son has had all his ribs broken, it is the ribs healing that I found the most painful bit. I was much much weaker than I could have imagined, it took so much energy just to lift a cup for a drink. But every day that got a little bit easier. Doctors wanted me to move to just paracetamol very quickly after the op, maybe 2 days after. It was too soon and it meant that I was in a lot of pain but I was too young and shy to tell the doctors. After 2/3 days they put me back on cocodamol as they realised I wasn't coping. So that is something to watch for, it really is painful!

Just take it slow and remember that even in a couple of months time your son may still experience aching in his sternum as any wires settle.
I hope it all goes well x

So happy to hear it went so well, and home so soon, blimey!

Do take it easy with him as he heals. Reading dulli's post, I never realised about the ribs having been broken and the wires settling. My son was much much younger obviously and couldn't really communicate about it all, but I remember starting baby massage a month or so after his op and him hating some of the hand movements on his belly/chest and he also hated tummy time for a few months after his op, like screaming hating it and now I wonder if it was because his chest was still sore/sensitive.

They don't break the ribs anymore, they cut through the sternum and open the rib cage out. My son has a bifid rib (a rib split in 2 along it's length) so he wouldn't have been able to have it broken as it wouldn't mend. There's no doubt the breastbone is going to take some healing and will be sore for sometime. We're over a week on now and he's doing just fine, we've got our check up back at GOSH tomorrow.

I hope today went well for you Seth and your boy. We went to find Gosh yesterday in preparation, it was a bit scary.

Hello, just to clarify that is what I meant, the sternum is split and the two sides of the rib cage pulled apart. It is very painful. Saying that the ribs have been broken is just my way of trying to explain how painful it is.

so glad it all went well for you sellmysoul, hope recovery is going well xx