helpful tips

[mummywoo1978]

my 15 year old is having a root replacement next week and valve replacement. i would be grateful for any advice that would help me to care for him afterwards. we are all in total shock as only diagnosed weeks ago.

[MichaelJH Heart Star]

Hello and welcome to the forum! I have no experience with young people and heart surgery so will leave others with more relevant experience to respond. The BHF website has downloadable booklets on heart surgery and it is probably worth chatting to the BHF nurses. Which hospital are they under?

[mummywoo1978 in reply to MichaelJH]

he is under the leeds lgi congenital department. just looikng for advice in making him comfortable at home etc.

[Calliope153 in reply to mummywoo1978]

Search tips "after heart surgery " here and you;ll find loads of advice and practical tips. From V shaped pillow to buying baby wash.....

First of all the shock for all of you is indescribable. You need a trusted listening ear now as will your son when all this is over. He will try to maintain the appearance of taking it all in his stride but at the moment he probably finds it all unreal.

Suggest you think about buying pyjamas in quantity - ones with buttons that open at the front are best. However due to the vanity of the teenager also suggest large Tshirts (larger than usual so no pressure on chest and easy over head) and a large zip up hoody for when friends visit. The bottom half loose joggers or pyjama bottoms. Or, as one of my students chose to wear, Hawaiian shirts and shorts. Visually quite disturbing....

Although you won;t be worried about GCSEs it will go through his mind. Access arrangements, rest breaks additional time can be put in place in due course. Liaise with the Head of Learning Support at his school for details. If he raises the topic just say airily the exam boards have thought about all scenarios

Go to something like a pound shop and buy one of those glasses that looks like a jam jar with a screw top lid and has a straw in it. He won;t really need the straw but you would be surprised how often youngsters manage to drop/knock over full glasses and you don;t need extra bed stripping or carpet mopping. Also it doesn;t make him look like a two year old with a sippy cup.Hope this helps - don;t forget that for the doctors this is routine although for you it is daunting. Best wishes to your whole family.

[mummywoo1978 in reply to Calliope153]

thankyou for your reply. plenty to think about there. will definitely have to go shopping for things.

[Healthyheart1 in reply to mummywoo1978]

I have no experience, it must be so hard. You want to take everything away from your child that you can't control. As said before the bhf nurses are fantastic and are very knowledgable. The consultants are always there to answer questions s pre OP. Everything will go well. Best wishes Sheena

[mummywoo1978 in reply to Healthyheart1]

at the hospital again this week so hopefully get to speak to someone. thankyou for your kind words.

[DavidG1971]

Sorry to hear that - horrible situation.

[mummywoo1978 in reply to DavidG1971]

it is and nothing i can do to help him.

[Calliope153 in reply to mummywoo1978]

just by being there you are helping him - touch is a great comforter.

[Calliope153 in reply to mummywoo1978]

How are you all doing?

[mummywoo1978 in reply to Calliope153]

Thanks for your reply. Things unfortunately not going to plan. He was suppossed to have the op yesterday but an emergency case needed his bed so it has been postponed for 10 days. It is an emotional rollercoaster at the moment.

[Calliope153 in reply to mummywoo1978]

How;s he holding up over the delay?

[mummywoo1978 in reply to Calliope153]

He is very up and down at the moment

[Nic25]

Hi mummywoo1978, appreciate this may be a bit late in the day as I'm assuming your child has had their operation by now - and I really hope it went well and you're both out of the other side and recovering from the experience. But if you still need advice I found these guides from Guy's and St Thomas' really useful:

guysandstthomas.nhs.uk/reso...

guysandstthomas.nhs.uk/reso...

But as I say this may be well be irrelevant by now. So just to say I really feel for you; it must have been a complete shock. I had an AVR in December at age 50 but had a coarctation repaired at age 7, after which a few years later they discovered my biscuspid valve and then my stenosis and from there it was regular check-ups for decades (thank you NHS!). So I can only sympathise as for my parents at the time it was a total shock (but being 1970s/80s they never talked about it).

The great thing is that these operations now are very standard for the surgical teams, even if they're a big and scary deal for us, so hopefully your child will bounce back and have a new lease of life. Good luck and hope the recovery and recuperation is going well.

Nic x

[mummywoo1978 in reply to Nic25]

Thanks for your reply. Unfortunately he hasn't had the op yet. It was supposed to be yesterday but an emergency needed his bed. It's now scheduled for 10 days time.

[Nic25 in reply to mummywoo1978]

Ah how frustrating for you. Get all keyed up for nothing! Sympathies. But good luck and happy to try and answer any questions you may have if I can. Good luck!

Nic x