My dad was extubated on propofol, and died.

[RayTay]

Hi everyone

My dad was extubated a few days ago. They turned his ventilator off as the doctors could no longer do anything.

I’m thinking about his dose of proforol and sedation. I think he had iCU delirium as he wanted to go home and was trying to pull his tube and lines out.

On the day he was extubated, they increased sedation. If I said his name, he would open his eyes and look. But I’m not sure how aware he was. As he knew his name and responded to it etc, so he could hear. I’m not sure how well he could see if he was drugged.

How aware were you all on propofol?

Has anyone been through this experience with a relative?

[RayTay]

P.s I told him I loved him and said everything I needed too, I’m just unsure as to what he heard and felt x x

[markmason095 in reply to RayTay]

I'm so sorry for your loss, i know how you feel! X

[Grant_za in reply to RayTay]

I'm neither religious nor spiritual - and an extreme sceptic when it comes to the unknown, but recent and current research would suggest he would have heard you and experienced little discomfort during his final time with us.

However you look at it, be thankful you got that chance to talk to him.

With me, after spending over 2 hrs with my mother in the ER room, in the short 10 minutes I left her side, she passed away - I never got the opportunity.

"Researchers say there's evidence that consciousness continues after clinical death"

youtube.com/watch?v=WnoIf2N...(Not working as expected?)

[RayTay in reply to Grant_za]

Thank you for sending me this video, I hope he could hear. It’s just a wonder how all of the drugs and sedatives they pump through you in ICU effect your brain. Thank you for your reply x

[Grant_za in reply to RayTay]

It would appear many patients researched would be under heavy sedation etc during invasive cardiac surgery, probably more so than a patient in ICU.

Despite the medication being used, something may be going on at a far deeper level than medication can reach or affect, at levels science has yet to discover or understand - time will tell

[RayTay in reply to Grant_za]

Thank you, yes I imagine they would be if undergoing surgery. Thank you 🙏🌟 I think you’re right x

[garycom in reply to RayTay]

He might have heard you. I was on propolol in a medically induced coma and severe delirium and I remember wanting to see my sister before I died even tho I was in a coma. And then suddenly she was there calling my name. I couldn’t move but I felt content - that it was ok to die now. Strangely as things turned out I didn’t die, but my memory is so strong of that event. I think people in comas are more aware that what doctors think. Was in a coma for a month.

[RayTay in reply to garycom]

Thank you so much for this xxxx

[garycom in reply to RayTay]

👍

[RestlessMeditator]

I am so very sorry that your father passed. My deepest condolences to you and yours.

I was intubated about three weeks on profolol, among other things. I was admitted with septic shock from community acquired pneumonia. For the last week on the vent, I was awake and oriented. I was on a low dose of profolol then and then weaned off before I was extubated. I also had ICU Delerium. It seems to be a given to have nowadays if you're vented for more than a few days in an ICU environment. I remember having some very strange hallucinations mixed with reality. I did have some aware moments and would be out cold again. I knew, on a whole different level, that my family was there though. I remember their voices and touches. I am sure he did hear you and that it was a great comfort to him. Again, I am so sorry for your loss.

[RayTay in reply to RestlessMeditator]

Thank you so much for this, it’s so very helpful to hear than in some way you were away of your families presence, touch, voices and it comforted you. ❤️ I will hold onto this and it does make me feel better.

My dad was also intubated for 3 weeks.

He appeared more alert at the start and was keen to go home and was asking for a “lawyer” when writing me notes.

But some things didn’t appear to be sticking in his long term memory, so things that had happened the day before he might not remember.

By the end, he was on a higher level of sedation of proforol and chlonadine. It was 1% proforol for 2mg per hour through a central line. But he stopped moving his hands, nodding, but would still open his eyes. I wasn’t sure if the lack of interaction was from the illness progressing or from increased sedation.

[Copse77]

I am sorry you have been through this traumatic experience and lost your Dad.

This short radio programme discusses ICU experience of a former ICU patient who was a trustee of ICU Steps. I found it very helpful to help me to understand our family’s experience of ICU trauma and delerium . There is also an ICU Steps guide on delerium.

bbc.co.uk/programmes/m0001jpv

Best wishes.

[RayTay in reply to Copse77]

Thank you so much 🙏I will listen to it today. I found the lack of communication with Dad in the last three weeks of his life traumatic as I worried about his frustration and if there were things he needed to say and couldn’t.

Thank you for the link, I’m sure I’ll find it helpful ❤️

[Hellabelle]

I was aware of my mother crying, but in my ICU delirium I was in another reality. I had visitors (according to my brain) during the coma that never bothered to visit me, and the only thing that I know was real and that was also real to me in my head was the tube down my throat, being restrained to the bed, and constantly hearing my moms voice/sobs. She visited every day, I was told.

[VickyC1982]

I don’t really have any recollection of the time I was in an induced coma and I only came out of it 14 days ago. I had bad ICU delirium and I only remember people visiting after I was well off the propofol and extubated. Even then I was talking utter rubbish though. I saw my psychiatrist (I have a history of anxiety & depression) and she was clear with me that I had a classic case of ICU delirium. She explained it to me that I was fighting for my life and therefore full of cortisol and adrenaline (fight or flight). Your brain puts you in life threatening situations that you have to get out of because of this, hence the delusions. I can only speak from my experience but I’m sorry that your father didn’t make it x