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DS has heartcondition and needs 3rd op. in 2 weeks time, I'm nervous wreck!

(6 Posts)
sweetmarije Mon 06-Jun-11 18:14:49

my DS has a heartcondition (tetralogy of fallot, hole in heart, blocked artery and some other problems) we discovered this in sept. 2010 when he was 16 months old and within 4 weeks he had 2 operations done, 1 small one called a heartcatheter where they go with a little wire through his groin to his heart but also big heartsurgery 3 weeks later which left him in intensive care for a week (standard procedure).
he now needs another heartcatheter on 24th of june, which basically means we have to be in hospital on the 23rd and stay overnight for his op. hopefully can go home later that day or day after the operation.

I'm just completely freaking out about it all. between finding out there was something wrong with my child and going into theatre for the first time was about a week and 2 weeks later he had major heartsurgery and although all of this was frightening, we were still so much in shock about it all that the reality hadn't really sunk in yet and we were on automatic pilot.

but now we had a few months to get used to the idea and had a few hospital visits, got more information about his condition and also heard (as you do when you google those things) some horror stories.

I'm just such an emotional wreck at the moment, just wish i could press a button and make it all disappear and I'm just really worried I'll lose my strenght in front of my DS when we're back in hospital. Also he is now a bit older and starts to understand things about pain and what the doctors are doing and he doesn't like it but isn't yet at the age where you can really explain anything to him.

sorry about my long story but just hope there are more people out here who went through similar experiences and can reassure me a bit or have some tipssmile

saggarmakersbottomknocker Mon 06-Jun-11 19:51:26

Sweetheart - take a deep breath. It will be fine. I know that's easy said - I've been where you are and it's hard. You just want to pick him up and run away, yes?

16 months is quite late for a ToF diagnosis and really you're not far along since then - I imagine it's not really sunk in yet. Have you ever posted on the Heartline messageboard here.
I'm over there a fair bit. I realise it's not for everyone as there are some complex cases there but plenty of good news too and lots of Tof parents.

I think this is a difficult age, there's no doubt, but don't forget the your heart unit does this all the time and will help every step of the way. Make sureyou take care of yourself too because it's hard to move away from the cot when they're toddlers.

sweetmarije Mon 06-Jun-11 20:08:37

yeah i wish i could!
thanks for the link, getting registered as we speak and hopefully will get some useful info and have a nice chat there!

saggarmakersbottomknocker Mon 06-Jun-11 20:18:38

I'll see you there smile Give me a shout if you don't get cleared to post.

devientenigma Tue 07-Jun-11 23:01:01

Hi sweet my ds has tetraology of fallot. He's now 10. He's had 2 open heart surgeries and his 3rd is expected between now and 15. It is a horrible time and you do tend to go on auto pilot, it's the only way to cope.
Heartlines message board is not something I have been on so can't comment.
Don't worry if the surgery takes longer than the time allocated, we were told roughly 5 hours, 8 hours later I was panicking but he was ok. There's also nothing anyone can say to make you feel any different. Though do please try to take things easier x

giraffesCantZumba Tue 07-Jun-11 23:02:45

No experience, but wishing you all best smile

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