Hope - my mums experiences with slow wake, ICU delirium after covid and PRES

[Bexx029]

I have seen a few posts here about slow waking from sedation coming off a ventilator.

After 2 weeks at home with covid and 2 weeks in HDU mum was moved to ICU and put on the ventilator for 2.5 weeks. She had numerous infections, internal bleeding, seizures, swelling in her brain and kidney damage (though she managed to just avoid dialysis)

When they took her off they initially thought they would have to reintubate but she managed to stay off. However it took 2 weeks for her to even respond to a command 3 weeks for her to even begin talking somewhat properly, but still had awful delirium. She was suffering hallucinations and wasn’t making a lot of sense. After 4 weeks of being ‘awake’ she moved into a Neurology ward.

My mum actually went blind whilst on the ventilator due to brain swelling, something that happened as a result of complications from covid and the blood vessels in the brain. PRES is the syndrome and apparently they are noticing it a lot with covid patients. This no doubt made her delirium so much worse as she lost one of her main senses. She has a speech disorder now and actually diagnosed with ‘foreign language syndrome’ as she woke up speaking with a welsh accent out of nowhere. She lost all her muscle mass.

However today after 71 days across high dependency, ICU, Neurology shes now on a rehab ward for intense physio and rehab and is the next step to coming home. She makes sense now and is her usual self in terms of conversation, longer term memories and personality.

I just wanted to give hope on a forum I came to looking for hope. I thought my mum was brain dead with the slow wake and severe delirium but this place gave me hope and there is hope that even when things go awfully wrong; people can still come away with a good life afterwards. Even if the life they lead is going to be very different.

My mum is taking being blind very well considering and I know she will make the most of her life.

Thankyou all and best wishes to you and your loved ones.

[Sepsur]

Critical care is that moment where we all suddenly realise that we have taken life, good health & longevity of life as a foregone conclusion - it is a really rude awakening and eye opener to one’s frailty & mortality.

I hope your Mum’s good grace carries her through the next few months & that she enjoys a rich period of time after rehab.

[Dolphin011]

God bless your mum ❤️ Sounds like she’s definitely on the right path now!! Wishing her all the best 🙏💕 xxx

[HopefulA]

Your mum sounds like an amazing woman, you must be so proud of her!

Wishing her all the best with rehab and look forward to hearing that you have her home with you soon xx💜

[RockRunner]

I’m so glad your Mum has pulled through. Do they think her sight will come back at some point as it seems so many things affected by CoVid can improve over time? I wonder if one of the nurses looking after your Mum had a Welsh accent? My husband learnt clinical speak whilst he was in a coma and during hallucinations has full two way conversations as if he is a nurse or Doctor which suggests they can subconsciously hear all that is going on. We firmly believe that as the day after we went to say goodbye - he was slipping away and we were told the bereavement team would be in touch the following day - he started improving. My husband also took weeks to wake from sedation, removing him from opiates made a difference. They have so many strong drugs it can take such a long time to get out of their system, especially if the kidneys are also damaged. Couple this with the break down of muscles so extreme weakness meaning cannot move even their face and the need for neurons to reconnect it’s not surprising it can take an age. I think most will be left with some reminder of this awful virus and life may be different, but the fact there is life is just wonderful

[Bexx029 in reply to RockRunner]

They had hoped so but have said at this stage they wouldn’t expect her to gain back her sight enough to not be registered blind still. She hopes to just gain enough to make out scenery and faces but anything is a bonus I guess. It has improved slowly to making out some movements and contrasts but nothing else.

I agree this will never leave us, we’re all permanently changed after this virus even though not physically for all of us. My mums life and ours will be very different but we are just feeling blessed to still have her here with us!

[Anuur44 in reply to Bexx029]

Hi Bex. Did your mum manage to regain her sight. Hope she’s ok and recovering ok

[Rgsable]

Thank you for sharing. Wishing you and your mum all the best

[stevet11753]

All best wishes to you and to your mum for her continuing recovery 🙏

[Ferham]

You must be so proud of your mum, she sounds amazing. So inspiring -wishing you all lots of love and luck in her recovery. x

[Mccarthy0702]

Amazing , hope your brave mums recovery journey is far less eventful and she’s home very soon xx

[holibob]

Wishing your lovely mum all the very best in her recovery. She has been through so much and sounds such a fighter. Best wishes to you all.

[Stephent2]

Looks like my wife is on the start of a similar journey ,just kills Me her little face when we had to leave her to be wheeled off to the operating theatre and not knowing if she was going to make it ,to be told halfway through a 7 hour op that she was very very poorly ,just kills me as nearly 30 years ago she 2 aneurysm and the pain she had to go through with them and now this ,I just pray she comes through it all ,feel better

now she has made it back on the ward from the operating theatre ,just waiting now for updates and prognosis ,she has a lovely daughter in bits and a husband barely able to hold himself together

[Bexx029 in reply to Stephent2]

I hope she makes a speedy recovery and know how it feels right now. Stay strong for each other!

[Stephent2 in reply to Bexx029]

Thanks Bexx

[Bexx029]

Thankyou everyone, appreciate all the messages as would my mum!