9 year old DD needs open heart surgery at Royal Brompton

[Adnat]

Hi, I am in a bit of a spin as in the space of a month, we have gone from being an "overprotective mom" to my daughter needed open heart surgery. She has something called PAPVR - two veins going into the superior Vena Cava. She doesnt have an ASD. Has anyone else been on rose Ward at Royal Brompton. Due to speed, we havent had a meeting with play team etc. There isnt time. I am not sure what to pack etc. She will be in for five to seven days according to the surgeon. I cant think straight. I've been through the Sammy book with her. Not sure if it helped. Any tips would be very welcome, thank you

Download some audible books and find an app with really really easy crossword puzzles. Sometimes you dont have the energy or focus to read but want to be distracted, and a bit of James Herriot going on about poorly sheep is very easy and soothing to listen to, and a crossword puzzle with 3 and 4 letter words is just enough of a brain challenge and you feel you are doing something! If DD might want to listen to stories as well, they have loads of great kids ones.

Take a really long charging cable and a back up battery pack. Sometimes the sockets are miles from where you can sit (or there simply isnt one)

Lavender scented wet wipes are nice if you or DD are feeling icky

A fuzzy blanket or throw to snuggle into, put around your shoulders, prop her up in bed - take a new one not an old favourite from home as you may not want to keep it.

If she has a lovely, take it, but be very very careful and try and make sure you have a copy of it.

Sending

@Adnat, I hope everything is going okay

sorry to ressurrect this thread. my son is going in next week to the Royal BRompton for heart surgery. Id be grateful for any tips anyone might have

Sorry to hear this.

I think the best piece of advice I can give you is to take some home comforts. I took a blanket from home for myself and dd. The beds aren’t comfy and are sterile so was nice to have a fleece blanket to snuggle into when lights went off.

my dd was 8 when we were in for a couple of weeks. I walked round the corner to Tiger shop and got some activities to do. We then hung them up round her bed to brighten her space up. Really made it feel a nicer place to be.

Remember to eat and drink. It’s easy to forget about yourself and then realise you haven’t eaten or had a drink all day. I got uber eats delivered to me in the evenings once dd was settled. That way I at least ate a meal each day.

hope things go well. The Brompton staff are lovely.