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Original poster

9 year old DD needs open heart surgery at Royal Brompton

29 replies

Adnat · 23/07/2019 05:31

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

OP posts:
CatToddlerUprising · 23/07/2019 05:41

My DD is in the Rose ward as an in patient or out patient every couple of months. The staff are amazing! The play team can come to you when you arrive- just ask a nurse. Take plenty of cash as the cafe and restaurant do not accept cards. There is a free cash point but if it isn’t working it’s better to take cash beforehand. Don’t drive unless they give the okay to beforehand, the parking is very very minimal and usually requires a permit.

mintyneb · 23/07/2019 05:44

We're heading to the Rose Ward in a couple of weeks! For a lung condition not heart.
Haven't had an admission for a long time but the play team are brilliant- Maxine the leader is fantastic and has talked DD through blood tests and injections when she's flat out refused to have them done.

It's a busy ward, lots going on but the Brompton is first class in what it does so you're in the best hands. Suspect you'll be in icu to start with before moving on to the ward.

Parking isn't great round the hospital so best for anyone visiting to get public transport.

Once you're on rose ward you're able to stay over night bit it gets a bit cramped when you've squeezed a camp bed into a cubicle! Ive heard there's a parents kitchen on the floor upstairs- necessary as parents don't get fed. The hospital has apparently won awards for its catering so there's a chance you might get something edible in the canteen!

Sorry I can't give more up to date info but I'm sure you'll be well looked after. It must be such a shock for you

Original poster
Adnat · 23/07/2019 08:21

Thank you so much. I'm sorry your daughter is in hospital so often. I will pack cash :-)

OP posts:
Original poster
Adnat · 23/07/2019 08:26

thank you so much Mintyneb. Yes they said I can stay with her every night apart from the night(s) she might be in ICU. One lady from the play team was with her for hte blood tests. She's scared of them but this lady was fabulous. I hope your daughter will be okay. Yes it is a shock, I kept being told DD had asthma but thankfully I kept querying it as the ventolin did nothing. I've been told the RB is fabulous, the surgeon is lovely and so easy to talk to. Thank you x

OP posts:
Lisette1940 · 23/07/2019 08:27

Adnat wishing you and dd all the best. Flowers

Original poster
Adnat · 23/07/2019 08:28

@CatToddlerUprising sorry only worked out now how to reply directly. All the nurses and play staff I have met so far are lovely - we were in for HCM screening. Thank you for replying and good luck with your DD. x

OP posts:
Lisette1940 · 23/07/2019 08:29

Adnat you've done brilliantly. Well done on persisting.

Original poster
Adnat · 23/07/2019 08:29

@Lisette1940 thank you :-)

OP posts:
CatToddlerUprising · 23/07/2019 08:39

Thank you 😊 We’re back up there the beginning of August, but just for the day. St Lukes church has some lovely gardens and a cafe inside if you need a change of scenery, it’s opposite the main entrance.

viques · 23/07/2019 08:41

My friend used to work at the Royal Brompton back in the day. They had kids there from all over the world, some the children of mega rich people, others with treatment paid for by their governments. My point is this, these people had the choice of any paediatric cardiac unit in the world.

They chose Royal Brompton.

I am not minimising your daughters condition, it is serious and complicated, but she will get world class care, and by the sound of it excellent support from the RB support staff.

After the op she will have the summer to heal and get strong again. By September she will be a different child, she will have grown, have more energy and you will be looking back on this worrying time from a new perspective. Take care of yourself.

CatToddlerUprising · 23/07/2019 08:46

And I hope it all goes well with your daughter too! Flowers

Original poster
Adnat · 23/07/2019 15:57

@cattoddleruprising have you stayed in their accommodation? They said it was available for when she was in ICU. Thanks for the tip on the church, my husband was hospitalized for a long time when a child and is almost allergic to them.

@vigues, a friend is married to a surgeon (hand) and he said something similar. Thank God we live in a country with decent hospitals.

OP posts:
CatToddlerUprising · 23/07/2019 16:10

I haven’t stayed in the accommodation as we, fortunately, live in zone 6 so one of us has stayed overnight. We were offered it at one point and from what I understand it’s basic but clean. If you come out of the main entrance, turn right and keep walking up you’ll come to a high street with a Boots, cafes etc. If you wanted to use the hospital restaurant, pop down when you arrive (basement level) and take a photo of the opening times. The cafe on the main level does hot and cold drinks and sandwiches

CatToddlerUprising · 23/07/2019 16:13

Oh and if your DD is in the ICU/HDU attached to the Rose ward- the meals are served from the playroom in the main ward. Ask the nurse what times you have to go to collect each meal as I believe they don’t go into the ICU/HDU.
It seems all my posts are about food but knowing where all that was located made it easier and quicker to nip out when you can

Original poster
Adnat · 23/07/2019 19:58

@cattoddleruprising, you have been fabulous thank you so much :-)

OP posts:
Northernlurker · 23/07/2019 22:17

In terms of packing:

Chargers
Jumpers and scarves/wraps so you can be comfortable whatever the temp
Travel pillow - if you're sitting in a chair a lot it will be nice
Nice toiletries, hand wash etc, hand lotion
Hair brushes etc
Clothing that's easy for dd to take on and off
Books on kindle etc
Socks! Clean socks feel nice and keep feet warm

I imagine you will have a lot of friends and relatives waiting on news. Set up a WhatsApp group or email group so you can just update once, not reply to seventy texts after every ward round.

Hope all goes well. My dd2 has a cardiac defect, never needed intervention as yet though. I feel for you but you couldn't be in a better place.

FlatheadScrewdriver · 23/07/2019 22:31

I've stayed in the relatives' accommodation. It was basic but fine. It was within the staff accommodation just behind Fulham Rd (two mins walk). I recall there was a kettle but no cup - I learned to pack a travel mug! Take yourself a towel too or swipe one from the ward Hope all goes really well for you. Our family has had great support from their paediatric and teens teams.

stucknoue · 23/07/2019 22:31

Not that hospital but my tips are to pack cash, a power bank in case you can't get to a spare plug socket to charge your phone, audiobooks on your phone and headphones, blocks out noise and useful for inevitable insomnia, cereal bars, crisps etc you might not want to leave her at first. Take a reusable cup, See if there's a parents kitchen, if so bring tea bags etc. Best wishes,

catlovingdoctor · 23/07/2019 22:39

Oh bless. I am a RBHT patient and a close relative works on in the PICU unit. Your little one is in such wonderful hands and will receive such good care.

Original poster
Adnat · 25/07/2019 13:28

thank you everyone for your kindness and hints. She is in the best place I know. :-)

OP posts:
HenSolo · 25/07/2019 13:36

I don’t really have any advice that hasn’t already been given, but just to say hi. Ds2 and I were on Rose Ward back in March. Play team amazing. Take ear plugs! (Applies to staying in any hospital!)

When I came on to the ward having delivered my son to the anaesthetic team for his surgery I was a little shaky. Another mum I hadn’t even spoken to yet came over and we had a big cuddle. Lovely solidarity in there.

You are both in good hands Flowers

Original poster
Adnat · 25/07/2019 20:24

@HenSolo thank you i am dreading that bit and the operation. I will get ear plugs, thank you. I hope your DS is doing great now. x

OP posts:
susan82 · 27/07/2019 09:21

@Adnat just wanted to say I hope it all goes well for your DD, I am sure it will and you will be in my thoughts, best wishes Flowers

HenSolo · 02/08/2019 22:48

Thinking of you. When is she going in?

Flossie44 · 06/08/2019 14:37

Hi. My dd was there a couple of years ago for two weeks. It was for lung reasons. As said before, Rose Ward is excellent. Wonderful staff. A really busy ward but so efficient. My dd took a turn for the worse well on the ward suddenly and the speed the staff kicked into action shows just why they’ve been chosen to work there. Simply wonderful, from cleaners to consultants.
I stayed on the ward. When dh visited on the weekends, he stayed in parent accommodation on Fulham road. It was the nurses accommodation. It was v basic but clean and somewhere to get your head down. Also 2 mins away.
I made friends with two other mums on the ward and we went to pizza express on kings road one night once the children were asleep. It was nice to clear our heads. I felt quite shaken and exhausted after two weeks there so look after yourself too and make sure you get out for some fresh air every day. Gail’s is just up the road too for a nice coffee.

Take care and let us know how things go with your dd.