Hand hold - DH likely to die in next few days

[Bahemoth]

My DH went to hospital a month ago with seizures that wouldn’t stop. He was resistant to all medication so they had to put him in an induced coma on ICU to try and stop them and reduce swelling on the brain. This last option hadn’t worked, as they don’t know the underlying cause for the seizures and they’ve now told me he’s unlikely to survive.

We have two young children and I’m not sure how I can face life without him or how I would break the news to DS9 when the time comes. My other child is 4. I’m in bits, he’s only 39 and was fit and healthy before this.

Thinking of you @Bahemoth 💐

Forgive me if I'm speaking out of turn, but maybe he twitched more hearing about the children as wanted to show his love for them and that he could hear you.

Still thinking of you. From what you say it definitely sounds like there is hope.

This gives me more hope thanks and I did mention scanning testicles for tumours and they said scanning is something they’ll do but I’ll chase this again tomorrow.

We’re still waiting for some immune blood test results but one of the mitochondrial tests was negative. Although they still may do a muscle biopsy to confirm this.

Am thinking of you @Bahemoth Praying for a positive outcome for you x

I've nothing useful to add but I've been reading your updates and praying to whichever god will listen that he makes a full recovery. My DS is 39 and he and his DW have 2 DC, 9 and 4 - and I just can't imagine... You sound like a truly wonderful woman. Sending a handhold and a big hug to you xx

I saw DH today and had a chat to the ICU doc. He basically said ICU have done what they were asked to do by neurology (eg sedation to switch off brain) but it hasnt stopped the seizures. He’s still getting them but not as often.

Their job now is to get him off ventilation and see if the IVIG immunotherapy works. He said the fact he’s been in hospital for 6 weeks and has declined isn’t great and he’ll have a weakened brain. But as he’s not a neurologist, and he will arrange for us to talk to the neurologist on Monday to find out if it’s possible to live a life keeping the seizures under control, if there are any other options to try eg steroids, or if the alternative is likely and he will lose all functions.

They’ve reduced his sedation though and he gave us a thumbs but unfortunately this doesn’t mean his better. Although it was lovely he could do that. So not great news but hes not giving up yet.

I feel embarrassed to provide this platitude, but try to take it one hour at a time xx

Still rooting for you xxx

Sending love and strength to you all.

Thinking of you OP xx

Thankyou for your update. I hope so much for a positive outcome for you all. Keep going. Sometimes the miracle comes from the patient. ❤️

What a rollercoaster OP. I cannot imagine.

Another one rooting for you

Thank you for updating us 🩷 I keep thinking about you and your husband and been hoping for better news as time has gone on 🙏

Really hope they can get to the bottom of it if possible. But otherwise I hope something can be done to manage the seizures etc. Sending so much love and hope your way xx

I am still here reading and hoping that they will find out what’s wrong and stop the seizures.

Not exactly the same situation ( though I so relate to the sedation being reduced then raised). It may mean nothing but the fact he gave you a thumbs up is awesome. I am not a doctor, just a wife who has been in a vaguely similar situation. Lots of love to you. It's a totally shit situation and pull the people you trust ( they may not be who you think they are ) close to you. x

Still thinking of you OP x

Another one thinking of you and hoping for better news for you all OP x

The fact he has enough cognitive function to understand and then carry out a thumbs up after being sedated for this long is a good sign OP.

Thinking of you OP. The thumbs up sounds positive. Fingers crossed

I hope him squeezing your hand gives you some comfort xxxxxx

Thinking of you still! Still here with a hand hold!

He's still fighting. I hope the neurologist will have better information for you.

If you think about it, there are quite a few cognitive steps involved in this. “ I need to signal something positive to this person I fully recognise and have remembered a way to say this without words.”

Thinking of you all - so hope there's positive news soon.