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Original poster

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:
Original poster
rosegold04 · 01/09/2024 21:15

thank you all! it really means a whole lot to me, i’m feeling okay-ish im just feeling very nervous and just scared that it’s going to be rescheduled again as it’s hard to be taking a lot of time off work and the cost of travel is so much. i just have to keep reminding myself that this is for the best for her and once it’s all over that’s it and it’s fixed🩷

OP posts:
Original poster
rosegold04 · 02/09/2024 06:35

@sashh no we don’t, i looked on the gosh website and they will only reimburse travel costs if you claim any benefits which we do not

OP posts:
sashh · 03/09/2024 06:22

That's a shame, I know travel can be a fortune.

Original poster
rosegold04 · 03/09/2024 07:03

yeah our first lot of tickets was near enough £150, second time round £130 including the cost of a railcard as you just never know what’ll happen if we will need the train again. i’m starting to feel very sick due to the stress of all of this, we leave tomorrow for pre op blood tests as they done echo and xray last time. just yeah deffo feeling it right now, my partner has gone to work but said if i’m still feeling really bad he will come home at lunch

OP posts:
Gratefulforever · 03/09/2024 07:13

My DC had heart surgery at GOSH, albeit during covid, and they provided accommodation within walking distance. I was allowed to stay at his bedside until late at night (they urged me to go and get some sleep when it got late) and be back first thing so definitely check if this is an option. When they’re on PICU they are sedated and have a nurse with them constantly and they are the most amazing, caring, hardworking people (and I felt this especially so at Gosh as my DC had previous heart surgeries elsewhere and the nurses were generally equally lovely but seemed a bit more stretched).

A PP mentioned good idea to have a recording of your voice which is a good idea or musical toy/something that smells of you.

So sorry you’ve had a cancellation but what helped me was to try to focus on the end result of your baby being better. They were - and are- amazing at GOSH for us so you’re in safe hands in my opinion.

This website might also be useful for other questions you may have https://www.tinytickers.org

Wishing you and your baby all the best.

Home - Tiny Tickers

Tiny Tickers improves the early detection and care of babies with serious heart conditions.

https://www.tinytickers.org

Original poster
rosegold04 · 06/09/2024 10:50

update- she is in cicu and doing very well. just very sore and hungry. was the longest 5 hours of my life yesterday but glad we’re getting somewhere

OP posts:
BatshitCrazyWoman · 06/09/2024 10:58

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

I agree with all of this. My elder DC had heart surgery at 3 weeks old, and we could visit at any time. And we stayed in the Ronald McDonald House.

BatshitCrazyWoman · 06/09/2024 12:10

rosegold04 · 06/09/2024 10:50

update- she is in cicu and doing very well. just very sore and hungry. was the longest 5 hours of my life yesterday but glad we’re getting somewhere

I'm so pleased to read this, OP.

FortunataTagnips · 06/09/2024 13:17

I’m so glad she’s had the surgery and is doing well, OP.
My DD had hers at the Brompton when she was 6 months old, and I remember what a terrifying time it was. I also remember how amazingly quickly the babies on the ward bounced back afterwards - tiny humans are remarkable!

sashh · 07/09/2024 04:42

Thank you for the update. I can imagine that 5 hours felt like days.

Original poster
rosegold04 · 07/09/2024 19:28

we’ve been up and down, had a few setbacks with oxygen sats and stuff like that so she’s on high flow right now and had some issues with oozing from her drain sight as they got removed today. all in all she’s doing well as the doctors are happy with her in cicu, very stressful for myself and my partner. as she’s coming off morphine and is so hungry she can get so so distressed and it’s just heartbreaking to see

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sashh · 08/09/2024 06:47

Oh OP that must be hard to see (understatement) but this really is the best thing in the long run for her and for her parents.

Try to get some rest and something to eat. Just take it hour by hour and then day by day.

Original poster
rosegold04 · 08/09/2024 12:33

she’s a lot more alert today, it’s quite nice to see her face. she’s on very minimal oxygen now hopefully will come off soon. she’s just very tired which i don’t blame her, we are going onto bear ward today as she doesn’t have any icu needs! it’s so crazy how quickly they can change x

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FortunataTagnips · 08/09/2024 17:46

That’s wonderful news! You must be feel so much happier.

Destiny123 · 08/09/2024 21:13

Amazing we love celebrating our discharges (and going to visit once stepped down to see the improvements

Ineffable23 · 08/09/2024 21:56

That sounds like a stressful few days but so glad she is perking up now. You must be so relieved.

Toddlerteaplease · 08/09/2024 22:39

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 😍

That's only supposed to
Be used for painful procedures. My unit has banned using it just for comfort!

sashh · 09/09/2024 01:18

That's good news OP.

Don't forget until the op her heart wasn't working correctly so the new 'plumbing' will make her feel better on the inside.

Original poster
rosegold04 · 11/09/2024 09:22

we got discharged yesterday! definitely more herself now! just on a schedule of paracetamol and ibuprofen for a week but slowly wean off ibuprofen first, honestly wasn’t expecting it to just be a five day stay in hospital only 3 days in cicu and 2 on bear ward

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Violetpigeon · 11/09/2024 14:58

That's great news! I'm glad your little girl is recovering so well and that she has been discharged. Sending lots of best wishes to you all 💛

sashh · 12/09/2024 05:17

Thanks for the update, I bet it feels great to be home.

FortunataTagnips · 13/09/2024 19:31

Lovely news! I bet you feel like life can begin properly now.

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