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Daughter- locked in syndrome

105 replies

Bricksandmore · 18/08/2024 11:32

My daughter went into hospital last week following a fall and slurred speech.
she’s been diagnosed with damage to the pons in her brain. She’s on a ventilator and paralysed (LIS) her only form of communication is blinking.
I don’t know how to help her, I don’t know what to say to her. I don’t know even what I’m asking?
She has young children.

OP posts:
Motnight · 18/08/2024 11:36

I am so sorry, Op, what a terrible thing to be happening.

Tulipvase · 18/08/2024 11:36

That sounds really hard. I would hope that the hospital could point you in the right direction but if not, is there a charity that could help you?

There is something called The Brain Charity - might be worth a phone call?

PerfectYear321 · 18/08/2024 11:39

I am so sorry to hear this

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Abuseandptsdsurvivor · 18/08/2024 11:40

Did the fall cause the brain injury or did she have a stroke and then fall? I am asking because depending on that the mode of recovery will be different (fall causing trauma would need supportive therapy and time for damage / swelling to go down. If it was for example a stroke it will be different).

Are the hospital having daily meetings with you ? In ICU you should be getting the chance to speak with a dr daily.

longdistanceclaraclara · 18/08/2024 11:42

I have no knowledge or experience but keep posting for support op. I am so sorry.

Abuseandptsdsurvivor · 18/08/2024 11:53

I agree very much with getting in touch with a charity for support as previously recommended by another poster

Mama65 · 18/08/2024 12:01

I am so sorry to read your news but try to stay positive. Talk to her about past and present events, memories, and her children. Things that make you happy, as that will help you as well.

Bricksandmore · 18/08/2024 12:09

No the fall didn’t cause it nor has she had a stroke, although they said this may still happen. It is to do with sodium levels in her brain causing demyelination.
Thank you for your replies, I will contact the brain charity.

OP posts:
Abuseandptsdsurvivor · 18/08/2024 12:11

Bricksandmore · 18/08/2024 12:09

No the fall didn’t cause it nor has she had a stroke, although they said this may still happen. It is to do with sodium levels in her brain causing demyelination.
Thank you for your replies, I will contact the brain charity.

please look after yourself, I know how absolutely traumatic this can be as had a close family member in ICU with a brain injury a couple of years ago Flowers

ZenaZula · 18/08/2024 12:15

Oh my goodness OP. This is just too awful. How old is your daughter? I know what it’s like being at the side of someone you love very much while they are on a ventilator. My sister was in a coma. Please keep posting for support. I think it’s so brave of you to share. I was in such shock at the time because it was just so sudden, I didn’t think to reach out but wish I had. Sending your lovely daughter healing thoughts and love ❤️

Beefcurtains79 · 18/08/2024 12:15

I’m so sorry OP, please look after yourself and your grandchildren of course. Have they said if there is any chance of recovery?

junebirthdaygirl · 18/08/2024 12:20

My friends dh was in intensive care during Covid with locked in syndrome. He has since come out and has had intensive rehabilitation and is doing well. He says now how he could hear all his family talking and sometimes when they squeezed his hand it really hurt but he couldn't let them know. Keep telling her how much you love her and speak good things about the children . Maybe play her favourite music but only for a short while as she may find any interaction exhausting.

It's an extremely traumatic situation for you all.

stayathomegardener · 18/08/2024 12:23

Further down the line hyperbaric oxygen therapy can be very helpful.

Do look after yourself too.

NewLifter · 18/08/2024 12:28

I'm so sorry you are all going through this op. Take care.

rainbowstardrops · 18/08/2024 12:31

This must be horrendous for you all. Sorry I don't have any words of wisdom but I hope your daughter can recover Flowers

Bricksandmore · 18/08/2024 12:35

They don’t know if she will recover. They lift her sedation every day to see how she copes. They said if she remains stable they will give her a tracheotomy as she’s choking on the ventilator tube. Her hands are swelling up so I’ve been rubbing them, I hope I’m not causing her pain.
We’ve only recently moved out of our home town so I’ve been staying at various friends houses. My friends have been fantastic but I feel terrible imposing my misery on them.

OP posts:
HeronTwist · 18/08/2024 12:55

Bricksandmore · 18/08/2024 12:35

They don’t know if she will recover. They lift her sedation every day to see how she copes. They said if she remains stable they will give her a tracheotomy as she’s choking on the ventilator tube. Her hands are swelling up so I’ve been rubbing them, I hope I’m not causing her pain.
We’ve only recently moved out of our home town so I’ve been staying at various friends houses. My friends have been fantastic but I feel terrible imposing my misery on them.

It is still such early days. One week post brain injury in ICU will be considered very early days.
like another poster said, ask for daily updates from the nursing staff, and regular updates from the Drs.

At this point she may not even be in a recovery phase yet, so there might not be much they can tell you regarding prognosis, even prognosis over the next few days/weeks, let alone months/years.

Having worked in ICU I think this is the hardest time for families - it is very difficult to accept that sometimes ‘we will just have to wait and see’ is the only truthful answer at this point. Your brain will be fighting to find some point to anchor to - a percentage that you can cling to, or a treatment that offers hope. But at this point sometimes it’s just getting through the day hour by hour.

if she is able to communicate through blinking then that is huge. She is still there and will appreciate every effort you and the staff make to communicate with her.
keep holding/rubbing her hand, you won’t be hurting her.

And one more thing, you may have been putting your own basic needs on hold in this crisis period, but at some point you will need to look after your own health - mental and physical. Or you will fall apart and be no help to anyone.

Eat regularly, shower as often as you usually do, lie down in your bed every night, even if you don’t sleep much. Take all the support you can get. Allow other people to pick up in areas they can, practical help and taking over duties you normally do.

You need to be strong for your daughter, and maybe her kids too, but away from them you’re allowed to cry and wail and break down if you need to, and lean on other people.

Take care, and I wish all the best for you and your family x

Upthejunctionandroundthebend · 18/08/2024 13:03

Are you able to communicate with her via the blinking? E.g. 1 blink or 2 blinks for yes or no. I'd be terrified of this and imagine any possibility of being able to communicate would be huge.

TruthThatsHardAsSteel · 18/08/2024 13:14

Oh my gosh you poor thing. Sending strength ❤️💖

Bricksandmore · 18/08/2024 13:45

Yes when her sedation is lifted she is able to blink yes and no. But it’s distressing for her as she’s silently choking.
I am trying to be strong, and trying not to cry in front of her.
Thank you for all your replies, it is helping.I feel so alone.

OP posts:
WickieRoy · 18/08/2024 13:54

I can't help OP, I just wanted to say your friends are probably delighted they can help by letting you stay, they probably wish they could do more. Don't be afraid to lean on them.

Wishing all the best to you and your DD. Flowers

Muchtoomuchtodo · 18/08/2024 14:05

Gosh, you poor things. It’s very early days for your dd, do look after your own needs too op.

Can you ask her team for a referral to speech and language therapy? They can help to work on a more effective and efficient way of communicating.

Haveanaiceday · 18/08/2024 14:07

Very sorry to hear this its awful for you and dd and her family. As she can hear make sure to tell her about how her dc are being cared for and you are making sure that all is OK at home. As a mum this would have been my big concern if I was in your daughters situation.

SaintHonoria · 18/08/2024 14:55

I'm not sure if you qualify for any help here -

rmhc.org.uk

Wishing your daughter a good recovery.

Normallynumb · 18/08/2024 15:36

I'm so sorry OP
Talk to her. She will be able to hear you
Take care of yourself and lean on those who love you
The staff in icu are incredibly kind, so don't be afraid to ask any questions