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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

I need a hand to hold.

567 replies

Troublewaters2021 · 07/03/2021 20:37

My DD8 had a heart transplant a few years ago now, she has been struggling this year on and off after a few good years. She has some changes in her cardiac echo however they said they would unlikely get worse they wasn’t really sure on the significance of the findings.
At 5.45 tonight she went in to perri arrest.
They were amazing and everything had happened so fast, she is stabilised in CICU. No one is allowed in apart from me she looks very peaceful, I am waiting for consultants.
I have been on here a while and sending myself crazy looking at the clock with no one to cry to.
It all happened so fast she was playing in the back and then she came through to say she didn’t feel well. Went to get her some paracetamol and when I came back in she was on the floor.

OP posts:
KaiaylaJonesOf78 · 09/03/2021 01:01

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Monday55 · 09/03/2021 01:04

🙏 Praying for you and your daughter 🙏 and wishing you a lot of strength during this difficult time Flowers

Original poster
Troublewaters2021 · 09/03/2021 01:08

Thank you all for your kind comments. She is peaceful and not much change via this evening which I think is a good thing. I just don’t know how she is going to cope when realises.
I don’t know how to deal with the aftermath. She is an active girl and although struggled alongside her peers with physical abilities she has always been able to walk.

OP posts:
justilou1 · 09/03/2021 01:18

The poor little bunny. I am sending you much empathy and strength to get you through. Being the parent is so very hard, isn't it? I hope you have had a long shower and a bit of a nap so that you can have the energy you need for when she wakes up. It's so hard to nurture yourself enough to be able to be the parent they need when they need you. She is lucky to have a loving Mum. x

ThumbWitchesAbroad · 09/03/2021 01:30

Reading between the lines then, she has had to have some amputation(s)? I'm so sorry to read that.
The technology available these days though is so good that hopefully once she recovers sufficiently, she will be able to walk again, even if on prosthetic(s).

Still thinking of you - hope you get some sleep. Thanks

Original poster
Troublewaters2021 · 09/03/2021 02:09

@ThumbWitchesAbroad not yet - but a very big possibility.

OP posts:
ThumbWitchesAbroad · 09/03/2021 02:24

Well I'm glad it hasn't happened yet and I hope very much that the antibiotics do their work quickly and well enough to render it unnecessary.

All strength and love to you, @Troublewaters2021

You're not sleeping obviously - do you want to talk about your DD in happier times, or anything else?

Iusedtoliveinsanfrancisco · 09/03/2021 02:25

You and your gorgeous daughter are tough. You’ve both been through a lot and you’ll get through this. One hour at a time. And in this hour eat a bit of chocolate. X

Original poster
Troublewaters2021 · 09/03/2021 02:35

@ThumbWitchesAbroad there is no where for me to sleep. We are not allowed to stay in icu but can visit whenever we want so I just sit in the chair.
She is beautiful, when she was born ( my second DC ) we thought she was healthy but things started to appear as time went on and by the time she got diagnosis her heart was in significant trouble. Despite all of that she has lead quite a normal life, she enjoys school, music and participated in her first sports day where she ran independently before covid.
The last year has been a struggle she for sepsis before Xmas but it wasn’t septic shock if that makes sense we caught it and 3 days of IV antibiotics she was right as rain. I can’t help be feel like I missed a fever and didn’t know she was hot.
I keep replaying the day in my head, she was cranky and tired the day before but I thought she had over done it. I didn’t take her temp ?? Why did I not take it !

OP posts:
Original poster
Troublewaters2021 · 09/03/2021 02:37

She does seem much more settled tonight, there has been no big issues just sort of the same which I think is good right ?

OP posts:
justilou1 · 09/03/2021 02:45

Oh Mum, sepsis can cook up so very quickly! You must not question yourself. Your DD is on meds that suppress her immunity, so of course it would happen super-fast. This is not your fault! She was probably just tired!!!

tenredthings · 09/03/2021 02:51

So sorry to read what you and your DD are going through. It must be so hard for you. Try to remember to eat and drink and try to rest a little, you need to look after yourself too.
I'm sending out positive healing thoughts to her and I hope that with each minute and hour that passes her body is gaining strength and mending.Brew

yaboo · 09/03/2021 03:10

no blaming yourself, missus! 'No Big Issues': that sound like a lil glimmer of hope to me x

ThumbWitchesAbroad · 09/03/2021 03:30

I agree with justilou - sepsis can be almost invisible and then come on in a real rush, so how could you have known?

She sounds like a lovely little girl and I agree that "no change" is pretty good at the moment - the new antibiotics should take effect soon and she should start to get better, for which I have everything crossed!

Sleeping in hospitals is nigh on impossible anyway, I've always found - had to stay in 4 nights with DS2 when he had his appendix out - and although he wasn't on ICU, just a standard 4 bed paed ward, it was non stop noise. I had a chairbed thingy that was dire for my back but was constantly on the watch for DS2 needing anything anyway, so sleep was a bit hopeful!

MsDogLady · 09/03/2021 03:55

I’ve been thinking of you and your sweet girl all day here in the U.S. It is such a blessing that she is peaceful and settled. It sounds like she has a strong spirit that will help her pull through this crisis. 🌻

wishing3 · 09/03/2021 03:57

These things come on so quickly so please try to be kind to yourself. Wishing you strength and sending love to you and your daughter.

Ginandplatonic · 09/03/2021 04:03

OP just adding to what others have said -definitely do not blame yourself - sepsis is insidious and non-specific at the start and then moves very quickly, even more so in an immunosuppressed organ transplant recipient. And the normal signs like fever aren’t always present in the immunosuppressed. And on top of that Infectious Endocarditis is sometimes called the Great Imitator in textbooks because it is especially hard to pin down. This is not in any way your fault.

And “stable” ie no further big issues is good news in ICU. All the best to both of you.

2018SoFarSoGreat · 09/03/2021 04:03

Like @MsDogLady I'm in the US so here if you need an ear on the off hours.

I know you won't get any real sleep but do try to shut your eyes and breathe deeply and evenly. That will help some.

Also drink. Keep hydrated.

Sending hugs.

Mamanyt · 09/03/2021 06:47

The candle is still lit.

fuckenay · 09/03/2021 06:52

Sending you love op.

My ds has a condition which causes serious infection to come on very quickly. He can have a sniffle and then the next day be dealing with a bad infection. I always blame myself too. It's natural as a parent but you know you're always doing your best, and that's all you can do. Thanks

Lougle · 09/03/2021 07:29

You didn't miss anything. I promise you! Even if she was in hospital, it would be likely that she was 'fine' one minute and 'really ill' the next. In ICU we took hourly observations and a patient could go from normal readings to very unwell in that hour.

Your DD has already shown great resilience and you must have been very resilient too, getting her through a heart transplant. She will adjust, whatever the situation will be.

Do try and get a little sleep while she is stable. She'll need you to be fully awake when she wakes up. Flowers

LarsErickssong · 09/03/2021 08:14

@Lougle

You didn't miss anything. I promise you! Even if she was in hospital, it would be likely that she was 'fine' one minute and 'really ill' the next. In ICU we took hourly observations and a patient could go from normal readings to very unwell in that hour.

Your DD has already shown great resilience and you must have been very resilient too, getting her through a heart transplant. She will adjust, whatever the situation will be.

Do try and get a little sleep while she is stable. She'll need you to be fully awake when she wakes up. Flowers

Lougle has hit the nail on the head here. I developed sepsis after an operation a few years ago, at my 12pm obs my temp was 37.2, by 4pm it was 40.4 and by 5pm I was severely unwell, and that was in hospital! I know it's hard but you mustn't blame yourself.

Keeping you in my thoughts Daffodil

EmbarrassingAdmissions · 09/03/2021 08:15

You have some very good descriptions of the swiftness of sepsis - and they're so accurate.

I hope you've eaten and you're looking after yourself. I'll be thinking of you and your DD.

LakieLady · 09/03/2021 08:25

Settled is a good sign, OP. And don't beat yourself up, sepsis comes on so suddenly sometimes.

Still keeping everything crossed and sending positive thoughts your way.

Sexnotgender · 09/03/2021 08:39

These things really can develop at lightning speed.

My daughter has several conditions that are difficult to deal with. She’s been hospitalised with pneumonia over 10 times.

Her respiratory consultant thought I was exaggerating the speed at which they develop. Until he saw us in clinic one morning, about 11am. She had a bit of a sniffle, he listened to her chest and said it was clear but to take her to the GP if necessary.
That evening she was in high dependency. He was on call and saw us. He was like I thought you were exaggerating! Thankfully as she’s now in her mid teens she’s developing a bit more resistance but we’re still careful.