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.

Do you have a comms board?

For a bit we used a basic one - a bit like this https://www.myboardmaker.com/Activity/13553687

It’s also good to have a way of going through the alphabet more efficiently if someone is blinking to communicate - you can make a board again w the letters.

It’s so awful, I’m so so sorry

No we don’t. I’ll ask my more tech savvy friend about this tomorrow and see if there’s anything that will help.
I’m also going to contact the brain charity that was suggested.
Thank you again everyone x

Oh OP it’s not the time to worry about imposing; you need all your energy to face each day at the moment. This is the sort of thing everyone dreads for their family and I can only offer my most sincere hopes and best wishes for recovery. The longer I live, the more I realise life can throw up such profoundly sad things at times. I guess the thing to remember is that having loved ones is really the whole point of life but does leave us open and vulnerable to this sadness. There can, however, be happy endings, even in cases that feel hopeless. And lack of a happy ending doesn’t take away the fact that there was a happy beginning and middle - which will always be yours to treasure.

I’m so sorry you and your daughter are going through this.
Im sure your friends are happy to help in any way they can so don’t feel bad about accepting their hospitality.
I think the fact your daughter can process what you are saying and communicate with you is positive. I hope you get lots of support from the hospital and your daughter makes a full recovery.

Some info here. https://www.headway.org.uk
https://www.thebraincharity.org.uk/condition/brain-injury/

Please Google Kate Allatt Locked in Syndrome
(Soelrry too hopeless to do a link) and find her website. I am sure she has info for support and may even help personally.

She had LIS and I've heard her speak a few times.

Take good care.

I have nothing practically useful to contribute but wanted to send you, your daughter and family lots of strength and the very best outcome.

I have absolutely nothing helpful to say other than you have my hopes with you. Please use this board as a place to come to vent and seek support at this unimaginable time.

Please keep us updated if you can. Thoughts to all the family

Thank you, I’ve ordered the book.

@Bricksandmore I am so sorry you and your daughter are going through this. Remember to take care of yourself. I’m sure your friends are happy to help in anyway they can, I know I would be if one of my friends was in your situation 💐

I'm so very sorry to hear about this, how incredibly hard for you, and for her of course also.
I wish her the best recovery possible, and healing thoughts go her way

How awful for you all. Hoping for a full recovery.

When you talk to the Dr, ask if you can record the conversation so you don't have to try to take it all in. Get a small notebook and jot down questions as they pop into your head. Most definitely take good care of yourself. Even if it's just walking outside the hospital for 30 minutes or having a short lie down in the afternoon. Your body will be running on adrenaline right now and it will be easy to miss normal signs like feeling thirsty tierd or hungry so you need to just eat drink and rest even if you don't feel like it. Sending you strength

I’m really sorry to read this, OP. I can’t imagine how hard this is for you and the family, and your daughter.

There isn’t anything constructive I can say, but I just wanted to offer a handhold and let you know that there’s a lady on the other side of the planet thinking of you and sending well wishes xx

OP, try contacting Headway brain injury charity. I have personal experience of invaluable support from them. Sending you and your daughter ❤️

Bless you and your poor son. Was the schizophrenia medication an antipsychotic? If so, I know how horrific the damage can be from such awful powerful things; I've been injured permanently by one of them prescribed off label for severe anxiety and insomnia after a head injury and post concussion syndrome. I now have a permanent neurological involuntary movement disorder called tardive dyskinesia that is a bit like Tourette's and Parkinson's disease combined but more obscure and weird.

These drugs are incredibly strong and powerful and alter brain chemistry and the neurotoxic potency of them I'd say is a crime against the patients who are given them.

Wishing you and your son the very best.

And I hope the OP and her daughter are so looked after, I send you the biggest hugs and best wishes for a strong recovery ❤️

I have no advice at all, other than I think the rubbing her hands (maybe some nice scented moisturiser?) sounds lovely, as does gently talking to her. I know when my grandma was in hospital (nothing as bad as this, she was 90 and poorly), she loved having her face gently sprayed with a rose water spray, she told us she found it really refreshing and loved the scent. Maybe something like that, if she could tolerate it?

Sending lots of love and healing wishes to you and your family, and make sure you look after yourself.

Sending you and your whole family love and strength OP.

These are very early days. In time, a Specialist Speech and Language Therapist will be able to support you in establishing a robust communication system for your daughter. They work in NHS rehab and brain injury services.

Sending love and strength to you and your daughter OP

Clodagh Dunlop from Northern Ireland had locked-in syndrome after a stroke, she has recovered to the point that she is now back in her job as a Police detective in the Police Service of Northern Ireland, advocate for after-LIS care and rehab and author of a book = A Return to Duty

If I were in her position, I would be terrified for my children. I think she would appreciate knowing her children are safe, okay, what they’ve been up too. Someone close to me recovered from a brain injury and it felt miraculous after the damage.

Thinking of you op, so hard. I don't know anything about this specific condition but I have a friend with a dd who communicates by eye blink tech, can even operate a computer, though hopefully in your case they can get functionality back though it's long long road. Remember to take care of yourself

Thank you again for all your messages. My daughter had a tracheotomy today which should make her more comfortable. She is very aware and trying very hard to communicate through blinking, but she’s also clearly exhausted and still struggling with being locked in.
your messages have given me hope and companionship, thank you x

I'm so sorry to hear you're going through this OP. Sending all the healing wishes there are to your daughter. I'm medical, and while this isn't my area, I would guess it's too early to even guess at a prognosis or consider rehabilitation, etc - just be there for her, and look after yourself as much as you can so you can do that. Thinking of you and your family xx

I'm so sorry op. Will be thinking of you.

Make sure to look after yourself.

Sending you wishes for a full recovery.

I've been thinking of you both today 💐 I'm glad your daughter is more comfortable after the tracheotomy and hope that you can both get some rest. Every day is a chance for a little step forward in her recovery, even if it doesn't feel like it at the moment. Take care of yourself lovely 🫂

💐