Heart surgery

Luba - can't offer any practical advice on this, but I wish you and your family well

Mumof3 so agree with your last paragraph. I worked in adult ITU for a while so understand your reasoning

Hi I’m a paediatric intensive care nurse the first thing I would say is that Great Ormond street is fantastic and your little DGS will be very well taken care off.

The practicalities on ITU your daughter will not be able to sleep be able to sleep next to her son. She should be given a room and will be encouraged to go and have a good rest.

On the wards she’ll be able to sleep next to him and will probably keep the room.

You will be able to stay with your daughter in the room so don’t worry about finding alternative accommodation.

Excuse me for prying though is your daughter’s partner ok with not being at the hospital especially if he is your DGS father, my apologies for asking I have had a child in intensive care there is no way my husband would not have been there. Is there the option for you to stay with the other child and the partner to be at the hospital. Again my apologies for prying.

Dragonfly46...yes they do have places I'm not really sure about it. There is an accommodation page which I will have to look into. I'm much better having a verbal conversation with someone in the know so it's clear in my head and I can jot down notes
Thank once again dragonfly46 ?

I really cannot offer you any practical advice but I do wish you all well. Maybe the hospital has a list of suitable accommodation as I expect this arises all the time.

Oh my goodness I feel totally overwhelmed by all your lovely messages ?
Luluaugust my daughter has rang several times but no one answer and that's no doubt because all those miracle workers are so busy. Thank you for your best wishes ?
Ninathenanny I'm so pleased your son is fit and well. My daughter worries because of his age and she doesn't want him to feel afraid. Tbh Ronnie is a tough little lad but still so tiny to have a heart operation. He's aware of everything at 4 and my daughter doesn't want him to have bad memories. For example when they gave her 2 year old an anaesthetic Emily had to hold the mask over her face until she went under and she was crying and reaching out until she went under so that's what's playing on my daughter's mind
Silverlining48 I do know he'll be in the best possible hands. I recently watched Paul Olgrady when he filmed GOSH but thank you for your extra reassurance ?
Maryeliza54 I will look that link up tomorrow and send it to my daughter.
The other thing we're unsure of is accommodation. My daughter's partner will stay at home looking after Ronnie's sister, so I'm going to go with them. We live in Norwich so it's a good 100 miles plus the underground etc. It'll be too much for her alone and she's going to need me whilst he's in surgery. So that being said I have no idea how long they'll keep him in but I'll probably just stay the one night so I need to be looking into accommodation for myself that won't break the bank as I'm sure my daughter will have a bed beside him, am I right in thinking that?

Thank you all once again for all your support ?

Luba would this link take you anywhere useful?

childrensheartsurgery.info/faq/3/2

He will be in the best hands, it’s a wonderful hospital. ( close relative worked there for nearly 20 years).
Suggest your dd speaks to doctors at gosh. Or check organisations like British heart foundation etc and see if they have a helpline. Am sure all will be well.

I empathise our youngest GC had 2 open heart surgeries at the Evalina in London at few weeks old. His was to patch a hole, they then realised a day or two later there was another smaller hole they had missed.
A different procedure I know but the same emotions.
He will be 7 in March and is doing fine.

Izabella that's what they thought DGS had antinatal

Very best wishes to your family. Could your daughter speak to somebody at Gt Ormand Street for reassurance.

Thank you ClareAB and Izabella I truly am grateful for your kind words of support. I'm trying to find out as much as I can about the procedure. I know he'll have to have open heart surgery and that he'll be on a vent during and after the op to keep his heart beating and that's the bit my daughter is struggling with the most. It'd be amazing if I could speak with someone who's child has had this procedure as my daughter feels more in control if she has and understands the facts. Her 2 year old daughter had to have a shunt inserted into her brain when she was 5 months old and then had it replaced 2 or so months ago. So she's really been through it with her babies and has to be strong for them, so I'm trying to do my bit to be strong for her.

Does anyone know if there's a blog or Facebook page for this cleft in the mitral valve where I'd be able to find out some more information? I want to reasure her...and I do...but it'd reasure her more if I was able to give her facts and or people's experience' s of this condition.
Many thanks for taking the time to read and reply to me it's massively appreciated ?

A marvellous place. My cousin had fallots tetralogy operated on there. Mitral valve surgery is commonplace to them and he will be in the best place. Totally stressful for you I know.

Just to say good luck. He's in great hands