Daughter- locked in syndrome

[Bricksandmore]

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.

I'm so sorry you and your family are going through this. As the mother of young children I imagine a lot of her thoughts are about the children, worrying who's looking after them, how they are doing, what the plan is for them if she doesn't get better. I know it would torture me.

Obviously you know her best, but I wonder if it would be helpful to repeatedly tell her how they are being cared for, reassure her that meds/ school uniform shopping/ new shoes or whatever are being dealt with. Be quite granular. E.g. if a child normally needs their mother to lie with them to get to sleep, tell them how the child is being supported by other family members etc. If one of them only likes particular foods, reassure her that those have bought etc.

My heart goes out to you OP.

Take one day / half a day at a time.

Dont think beyond that, it becomes overwhelming.

Im a nurse and as was mentioned up thread you can record meetings with doctors/ the MDT.

They might not like it , but if helps you then do it .

Thank you forever, yes it was an anti-psychotic, this one, even says comes with a risk of death in children

bnfc.nice.org.uk/drugs/haloperidol/

Hopefully the tracheotomy will make your daughter more comfortable and also help with her exhaustion. It sounds encouraging that she’s very aware and the nurse’s advice upthread to reassure her and tell her her children are ok will help her too.
Sending you all the positive healing vibes I can. 💐

Oh OP you poor thing. I can’t imagine how overwhelmed you must be. Is there anything practical any of us could do for you? If you’re near me i’d gladly bring you coffee or clean clothes etc.

Hope you get some good sleep tonight x

Just seconding the offer to bring any practical help that might alleviate in some tiny way what you're going through.
I'm in SELondon ,near Kings,Guys ,St Thomas's.

Morning @Bricksandmore.
Hope that the tracheotomy is a positive move and that you see small signs of improvement. Also hope that the children are as OK as is possible and that you're getting able to look after yourself.
You're all in the thoughts of lots of us on here.

So sorry OP I have only just caught up with this. Another offer of is there anything you need?

Thinking of you and your daughter💐

Hi @Bricksandmore
Just sending love and thoughts to you all.

Hi OP,
I've been on a coma twice - on a ventilator which resulted in a tracheostomy twice - the choking is horrible even with the tracheostomy tbh but it's a good sign that they are bringing the sedation down.
One thing I would suggest is doing your daughter's hair daily/ when you visit as I was devastated when I got out of hospital last year ( after 6 months - loooooong recovery) and my hair was matted beyond repair and I had to have it all cut off and I looked like a boy.

Take time to process this - it must be hard for you too.
X

There’s a shred of hope today. She managed 30 minutes without the tracheotomy this morning. Her eyes are focused and she can feel our touch.They have also referred her for neuro rehabilitation.
Thank you again for all your kind messages x

That's positive - small steps and all that. x

It sounds like positive news. Brains can heal and you can make a recovery so please hang on to that hope. Take care of yourself too.

Oh, OP, I'm sending you and your daughter all my thoughts and prayers. What a terrible thing to happen.

I'm glad to hear that she is making some progress. Fingers crossed that it continues.

💐 🕯

This is a really personal one and might not be the case for your daughter, but when I had a stroke a few years ago the worst thing for me was being stuck on my back unable to move or see around me. It filled me with absolute terror. If you are allowed, she might like her head rest up so she doesn't feel stuck flat on her back. Like I say this is just how I felt but I hate thought of anyone else suffering that same anxiety

@Bricksandmore a really positive step. You must be exhausted, make sure you look after yourself.

Thinking of you both @Bricksandmore

@Bricksandmore i can’t add to some of the advice and suggestions but I am wishing your daughter a full recovery and much strength to you all x

So pleased to read your update.

Sometimes CPM is caused by sudden changes in sodium level - was she in hopsital being treated foe something when it happened?

My heart goes out to you and your family OP

Thinking of you and your daughter.

She was in hospital 5 days before the diagnosis of CPM, she went in because she fell and had slurred speech. Her symptoms became worse and she is where she is now. They believe it to be caused by a change in sodium levels.
she is still very poorly and ( they’ve said) in a lot of pain, although some slight movement, but no speech yet.

Firstly I am so, so sorry.

This is usually caused by a low sodium level being corrected too quickly, not the low sodium level itself. Ask the ITU team specifically about that.

I've had two patients with central pontine demyelination secondary to correcting a low sodium level too quickly. It took months, but they recovered. It won't be true for everyone, but don't lose hope.

Wishing you and your daughter the best.