Distress coming out of sedation - have you experienced this?

[Annabelsri]

So my poor dad is still in the same condition since my last post.

His on day 7 on the ventilator now after his surgery. Everyday they try to take him out of sedation and every time he gets distressed and doesn’t follow commands, so they put him back under again.

I’m trying to stay positive but I just feel like everytime we ring, no progress has been made and we’re all still stuck in this nightmare. It’s been a month today since he went in for his operation.

I still can’t get my head around what has happened, he went in feeling really scared about the operation and we all assured him he’d be fine and it will all be okay. But after the operation they have failed to wean him off the ventilator and wake him up not distressed from sedation. I was no prepared for this at all, and when I heard the operation was a success I just assumed everything was okay, I thought he was ok, but now we’re all still stuck in this limbo.

I guess what I’m asking, has anyone you know or even you been in distress after sedation? Was their a cause for it? What was the outcome and how was it overturned? Any positive stories right now would really help me

The doctors have said his on a calming mediation so he shouldn’t be having hallucinations or anything like that, and he also shouldn’t be feeling any pain with the pain relief. So I just can’t understand what has happened and what has gone wrong. They are performing a tracheostomy either today or tomorrow as the doctor isn’t happy that he isn’t progressing. But I don’t know what happens after that.

I just cannot describe how I feel and what the last few weeks have been like apart from an emotional rollercoaster and feelings of guilt, sadness, exhaustion and fear.

Thanks in advance x

[Sepsur]

I cannot be categorical over the cause in your father’s case but for me it was a combination of illness, organ &cognitive dysfunction and delirium - Many icu patients suffer delirium - some don’t.

The problem is it is oftentimes the medication & sedatives that exacerbates the delirium - it’s a bit of a vicious circle. We hold a friends & relatives zoom meeting every Tues evening at 18.50 which you would be welcome to. Email

[e-mail]

[PeterJu]

hi Annabel. I am no medic but was on a vent for 9 days last April. They tried to take me off on Day 5, but it was unsuccessful. Your wording is absolutely right- the experience for relatives is a terrible rollercoaster. You are doing everything you can and have no reason to feel guilty. I believe it is way worse for family at this point, as the person on the vent is unaware.

Pls just try and be kind to yourself and nurture your own well-being. This is an emotional marathon and you need to look after yourself. Very best wishes to you all. Pete

[Annabelsri in reply to PeterJu]

Thank you so much Peter. I’m sorry to hear you were unwell last year but it’s nice to hear your better! Thank you so much for your kind and positive words. X

[PeterJu in reply to Annabelsri]

best wishes. Pls message me if you want to, cheers, Pete

[LeeB73]

Hi Annabel, I can only speak of my own experience being sedated and struggling to wake up. What really helped me out was a phone call from my wife at home, with nursing staff holding the phone to my ear. They had already tried a few times to bring me around and it was a psychologist who recommended it.

I hope your Dad recovers soon.

[Annabelsri in reply to LeeB73]

Thank you lee! I’m hoping the hospital will allow us to FaceTime him. He finally had a tracheostomy yesterday! They are going to try today to take the sedation off X

[Myepisode]

Hi I was on vent last February for 10 days in for 3 weeks. They tried 3 times to bring me around it worked on third with a drug they use for adhd the other twice I was so agitated they put me back under. It’s awful for u to watch my daughter was in a terrible state with me. Be patient stay calm xx