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Children's health

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heart surgery at gosh

48 replies

rosegold04 · 27/08/2024 23:46

my lo is having heart surgery at gosh on thursday, and tbh i have no idea what to expect out of this whole thing. i am a ball of nerves. they’re fixing a hole in her heart and all the veins drain into the wrong bit, she’s only 8 months old and im just so worried about her being in high dependency unit and i can’t be there overnight! how will she be comforted? any advice would be so helpful, we don’t even know how long we will be there, we have pre op assessment tomorrow afternoon and we are in norfolk so we have to get the train down and i’m just so scared

OP posts:
PoopedAndScooped · 27/08/2024 23:47

Why cant you be there over night?

rosegold04 · 27/08/2024 23:49

@PoopedAndScooped while she’s in the high dependency unit after surgery, parents can’t stay at the bedside and i don’t know how long she’ll even be in that unit before moving onto bear ward where i can be at bedside

OP posts:
PoopedAndScooped · 27/08/2024 23:49

The pre assessment unit will be able to any questions you have.

Write the questions down if you need to and you can even write the answers down if you think you may forget the answers

Are you driving or getting the train?

rosegold04 · 27/08/2024 23:50

we are getting the train

OP posts:
rosegold04 · 28/08/2024 00:25

i know pre assessment will help, i just hope people will share any advice for staying or their own experience with a child having a big heart operation :)

OP posts:
Okokokokokish · 28/08/2024 00:30

I have spent today with a friend that works on this unit. She is passionate about her job ..you and your child are in good hands.X

PoopedAndScooped · 28/08/2024 01:17

Why cant you stay over night?

The black cabs from the station to Gosh kindly dont charge you

pinkpantherxxx · 28/08/2024 01:23

Sorry I have no advice but just came to say even though you are so nervous I would be too undoubtedly but your so incredibly brave absolute worst thing for your baby to go through something like this but also the thought of maybe having to leave them I'd crumble im sorry OP but hats of to you mama
just know your baby will be in good hands🩷

sashh · 28/08/2024 03:59

Does she have Tetralogy of Fallot OP?

It doesn't really matter just concentrate on her being in the best place.

As for high dependency and comfort, I would imagine she will be sedated at least partially so will be more sleepy than anything.

I'm out of date with cardiology but I do remember that physio like patients to cough after open heart surgery to help clear the lungs and protect from infection.

They used to hold a towel around the patient's torso but you can get the same effect with a well stuffed teddy.

If she is allowed one in HDU you can get a teddy that you can record your voice in. Ask at the pre op clinic.

For you it will be a long day, but not for your little girl. She will go to sleep and wake up and time will not have passed for her.

rosegold04 · 28/08/2024 04:23

@PoopedAndScooped we can’t stay overnight when she’s in high dependency as there’s so much equipment there’s not enough space for us until she’s moved onto a normal ward then we can stay with her overnight

@sashh no she doesn’t, she has atrial septal defect and anomalous pulmonary venous drainage into coronary sinus. thank you, i’ll look into it! i just hate the idea of her being without me overnight and i just worry so much!

@pinkpantherxxx thank you so much🩷 i’m finding it so so hard to keep together but with having to figure out trains and everything my goal is just keep together until we get there!

@Okokokokokish thank you! that’s very reassuring to hear xx

OP posts:
Destiny123 · 28/08/2024 05:57

Double check on the residential aspect as evelina picu let parents stay at the bedside 247 except for the 2x30min handovers between staff, but obviously encourage them to get some rest to look after themselves too (similarly I've seen parents at the bedside in the middle of the night at Kings picu but as I've never been to gosh it must just be cramped at the bedside

You should have the equiv of Ronald Mcdonald house to stay in for families and local restaurants are lovely at donating food to families

For the first probably at least 6h post op they're kept in a deep coma and not aware of anything just so we are happy they don't have any complications then we slowly wake them. They'll stay a little while in picu then step down to a high dependency unit then cardiology ward, it's v protocolised

Def don't worry about them being ignored that will never happen the nurses do the job cos they love them to bits, the nurse to child ratio is never normally more than 2. You can decorate your cot, blankets and toys are encouraged. We would never let a baby cry alone, if their nurse is busy with the other patient one of us drs will come over immediately from the desk for cuddles, our evelina babies have bedside white noise/lullaby machines, we love coming over for cuddles and strokes, they most certainly won't be lonely. We often come over for cuddles in the night if we aren't busy and rapidly know exactly which babies cries are which from the other side of the room which I really didn't expect to happen!

Picu can be scary when you first go there due to all the wires and tubes etc but just talk to the nurses they're all lovely and will explain everything

From an anaesthetic perspective you'll be allowed in the anaesthetic room until they're asleep then the nurse will take you out to the main corridor- go get yourself a decent breakfast as a distraction as the surgery will be many hours

Best of luck try not to worry, I know it's a really scary time but anyone that works on picu loves and cares for the kids as their own x

Destiny123 · 28/08/2024 06:00

Oh and sugar drops. We have tiny little tubes of sugar when the babies are being grumpy, few drips and a dummy/some strokes and can see their tiny little faces start to smile from the sugar high, so cute 😍

lifesrichpageant · 28/08/2024 06:05

My friend's LO went through a similar surgery at gosh over 10 years ago and is now a big thriving girl. Good luck.

Stringervest · 28/08/2024 06:08

HI OP. My child didn't have the surgery yours had but he did have a 12 hour operation to remodel his skull when he has just turned 2 (his surgery was at Alder Hey) and so I can understand some of what you are going through.

There is a Facebook group for my child's condition which was a godsend. I would recommend seeing whether there are any Facebook groups you could join, either for parents of children with your child's condition, or for parents of patients of GOSH. If so, they will be able to offer you a wealth of knowledge and support.

I would second someone's recommendation for trying to leave the hospital during a long surgery. It is a difficult time, and distraction helped to pass the time for us.

Very best wishes for the operation. I hope it goes well.

redtrain123 · 28/08/2024 06:20

GOSH have accomadation where where you can stay overnight to be nearby. We stayed in them when my dc was at GOSH twenty years ago (that’s why I always do are to Romans McDonald charity in McDonald’s). Have you been told about them?

Wishing your dc a speedy recovery.

Biscuitsforbrekkie · 28/08/2024 06:22

My son had heart surgery at gosh and the staff there were absolutely amazing! He was scheduled to go in first thing so we went down by train and stayed overnight across the road. I was allowed to go into the operating room and watch him settle on the bed and comfort him as he went to sleep, then I went up to the canteen to wait for him to come out. The staff kept me fully informed and they've thought of so many things to help that just don't apply in an adult hospital.

Hope the op goes well

sashh · 28/08/2024 07:38

OP

There is always someone on here if you need to talk, vent, just need an unmumsnetty hug so while you might feel a bit alone you have a load of virtual friends cheering you and your little girl on.

rosegold04 · 28/08/2024 20:33

we got here and they done a few of her pre admission stuff and then told us that they’ve had to cancel surgery until they can do a ct on her and discuss the plan with everyone😭 so we’re spending the night in the hotel they booked us and travelling back home tomorrow, i feel so defeated💔

OP posts:
Ineffable23 · 28/08/2024 21:06

Oh no OP, what a nightmare. That sort of thing (stress that's totally out of my control) makes me feel utterly exhausted and as though I have no energy. I think it's even worse when you're psyched up for a different stressful thing and then it doesn't happen. I can imagine you must feel dreadful.

Did they give you any timelines for the when the cancelled operation might be?

sashh · 29/08/2024 06:51

OP Oh no, you have got yourself all ready and then this?

Don't be defeated, enjoy a late leisurely breakfast and have a wander before setting off home.

We will still be here for the next step.

KC1234 · 29/08/2024 21:15

Hi, my little girl had open heart surgery when she was 9 days old. We were in Bristol so don’t have any experience with GOSH but I am sure they’re just as fantastic.
when she was in PICU we were discouraged from staying overnight and it felt weird to leave but the nurses were amazing and we felt she was so well looked after. We called multiple times overnight. I would also advise to try and get out of the hospital during the surgery and try to take your mind off things, it’ll feel like the longest day
my little girl is now 2 and she’s absolutely thriving. Hope it all goes ok xx

rosegold04 · 30/08/2024 07:10

thank you all so much! i got a call on the way home yesterday, its been rescheduled for next thursday as they want to do it quite soon. i’m just so nervous of it being rescheduled again as its quite the journey to make and it’s so hard to get all psyched up in fear that i will have to do it all again. me and my partner said we’d try and do a little exploring while she’s having surgery, it’ll be hard but i’ll need to stay distracted for my own sanity. im just so scared for seeing her in the state she’ll be in right after with all the tubes, im a ftm and only 20 so this is so much more stress than id ever imagined xx

OP posts:
sashh · 31/08/2024 11:40

Thank you for the update. I'm sure a few of us will be about on Thursday if you want to talk. Obviously if you don't then that is fine too.

Violetpigeon · 31/08/2024 22:21

Hi OP, I hope you are feeling a bit better today? My child had open heart surgery when they were a baby and I remember how I was dreading see them afterwards but really it was a relief once the surgery was done/taking place.
The thought of all seeing all of the tubes can be scary but the nurses can explain what each one is for and gradually as things improve they get removed.
It is emotionally very tough but you will get through it, just take things one step at a time. If you would like to ask any questions feel free to PM me. I will be thinking of you and your little one this week 💐

pinkpantherxxx · 01/09/2024 10:54

Please keep us updated with how the surgery goes and how your little one is doing🩷 my heart truly does go out to you my little boy has to have a minor surgery nothing compared to what surgery your baba is going through but I can relate to the fear it's all still scary and overwhelming

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