My husband is suffering ICU delirium and was really agitated overnight, apparently he wanted to get away. The doctors put him back under sedation and intubated him again.
i am so scared for him now. This was his nightmare and i do feel that the hospital is disagreeing that it is ICU delirium - i have been trying so hard to stop them doing anything drastic and I can’t believe this is what they chose to do to him. I am out of my mind right now and don’t know what to do and if I should get him moved to a different hospital.
He was doing so well, already more lucid and walking yesterday, i can’t believe they did this and didn’t even tell me until 8hrs later when I called. He must be going out of his mind being back on propofol again.
What would you do?
be clear he was high risk for delirium (intubated, acute kidney injury, very tiny intraventricular brain bleed) and his brain scans have all come back fine so i don’t understand why they think it isn’t delirium. They keep saying ICU delirium doesn’t last that long. It’s only been 2 days!! I’ve read it can last days or weeks.
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Clunk
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it isn’t very easy to identify delirium and you are probably right! Anything he tells you / says to you may not be true and he doesn’t mean it. Delirium doesn’t last just for the time in hospital and can go for some time after. We are all different. I was certainly re sedated for my own (and staff protection) safety.
If you don’t think you are getting the answers you should you can seek advice from PALS. Their details are on the hospital web site.
My delirium lasted about 10 days after 42 days of coma. I reacted badly when they treated my delirium with Seroquel. Probably would have cleared more quickly without it. I have no idea why they would put him under again.
I was re-intubated – failure of the first attempt is normal, not in itself significant. Delirium is expected when coming out of a drug induced coma (very ‘hard’ drugs): the extremely weird world of delirium is, while it lasts, absolute reality for the patient – ‘normal’ reality gradually replaces it. Physical pain and intense anguish are not delirium. After ICU and High Dependency, the worst day of my life was my first day in re-hab: believing I could walk out, I wanted my wife to come and get me, and, for one moment in my life, I genuinely wanted it all to end. Now, we laugh about what I thought and said, my gross language, the nurses I hit out at – they can handle that stuff. You refer to the hospital as ‘they’ – ‘they’ are a multidisciplinary team of highly trained and experienced medics, all cross-referring about your husband’s treatment. Trust them – it makes both your life and their work easier. My time in an ICU coma was far worse for my family than for me. Take the best care you can of yourself. As your husband recovers, talk to him on the phone, take him family-happy-time pictures, suitable food and juices.
hi clunk my dad has this too. It’s been ongoing. It’s day 30’in the ICU. He’s post lung transplant surgery and he’s grabbing at tubes and tired to leave his bed. Also he sees things that are not there and says weird things. They are all over his global heath - checking organs etc - he is apparently okay. We’d love to see him thrive soon.
Hello! I’m so sorry you are going through this. My mom was in ICU for a month about 2 years ago, followed by a month on med/surg. She was septic after a perforated bowel. She was intubated a total of 4 times in 2 weeks. She was also taken back to surgery after her bowel began leaking at the surgical site. She still has nightmares to this day and also does not know what was real or what she imagined during that time. ICU delirium and psychosis is real and looks a little different for everyone.
She was maxed out on propofol for 3 weeks, with a fentanyl drip as well, as her tolerance kept increasing. My moms experience was terrible with the hospital, with some really awful docs. They tried bipap which made her anxiety 10x worse.
Is the ICU doing sedation vacations every day? They tried stopping my mom’s sedation cold Turkey and it did not work. Have they tried precedex for your husband? My mom had to be kept on low dose propofol and fentanyl patch after extubation, which they did not want to do but I all but refused to let them take her back to surgery and trach/peg her. Her lungs were great and after the first 9 days she never had issues with oxygenation. They will likely try to push the same thing for your husband if he requires a vent for longer than 2 weeks. Don’t let them! They will trach/peg him and try to send him out to an LTAC as soon as they can. I know it may not be possible but try to stay with him, especially at night. Bring pictures of loved ones to hang around the room. My mom says it was the picture of her 9 month old grandson that got her through. Anything to make home feel SAFE and comfortable. My mom LOVED leg and foot massages during her stay. Cool wash cloths if he’s warm, or warm blankets if he’s cold. Maybe music if he’s a music lover? My mom isn’t a big music person so I didn’t try that.
I was a polite pain in the butt, and even had an argument with one of the docs. They would come in every day for their assessment and not even make it 3 steps into the door. No physical assessment. The one doc said to me, “I’ve been an intensivist for 30 years” to which I responded, well I’ve been her daughter for 33 years. Be his ADVOCATE!! It sounds like you’re doing a great job, but remind them (nicely) this is his healthcare, not theirs. Be persistent. If I would have let them continue on their preferred course I don’t want to know what the outcome would have been. Her chart to this day still says she was trached/pegged because they were literally ready to wheel her to surgery.
I’ll be following. I’ll be praying if you are the praying kind. My journey def took me closer to my spiritual self. A miracle happened for my mom. I left out that she was maxed out on pressors too… which never usually ends well. Best wishes. Keep at it, you and your husband have this.
thanks for checking in! I’ve been meaning to come back to give an update.
I was very upset that day, understandably, and had a long chat with my husband’s main doctor. He explained actually that he agreed with me that it was delirium. A lot of my concern stemmed from the fact that I’d spoken to a consultant the day before who was arguing back that it isn’t delirium and something else is wrong. Anyway, I am still upset that they re-sedated my husband, I get why they did it — he was trying to leave the hospital and was deemed a danger — but it was still traumatic for him to be grabbed by three guards and put back under.
My main concern was also that this would happen again, especially as now my husband would have a reason for his paranoia of the hospital staff. But the ICU finally allowed me to stay with him through the night after the second wakeup. I am so grateful for that.
So we woke him up again after 2 days and this time he looked much better (so maybe it was for the better?). He was still very paranoid the first night and it helped immensely that I could stay with him but he chilled out a bit after. He still had hallucinations but less often. The second night he was actively trying to sleep finally, but couldn’t.
I was also burning myself out being at the hospital the whole time (so he wouldn’t get put under again) and also trying to do my job, worrying that he wasn’t sleeping still, etc and a very kind nurse explained that I could get him discharged.
I hadn’t even thought of that! At this point he was already going to toilet and everything so it didn’t seem that crazy. The doctors advised against discharging him that next day so they could see one of his vitals further improve but he then got discharged the following day (day 3 after the second wake-up).
We don’t regret it, his delirium started clearing immediately on the drive home and the next day he was 90% back to himself. It’s now been a week and he is doing great, we talk about which memories are real vs fake. He has gotten sleep finally.
I feel lucky that he was well enough to get discharged so early. But we definitely traded it off against possibly finding out sooner what caused the seizures that landed him in the ICU. They did a lot of tests on him during his 10 days in ICU and didn’t find a cause yet. We have a further referral but now that we are on outpatient time, we expect it might take a bit longer. Have considered going private but they said it wasn’t needed.
i am so grateful for everyone’s messages and posts here. Trawling these forums was the only time I didn’t feel horribly alone. I found dealing with delirium the worst part of all this (mainly because I didn’t know if i was doing the right things, none of our kin understood what it was, and because I felt the hospital didn’t take it seriously enough). I can’t believe no one even mentioned it to me! I had come across it after researching why it had been difficult to wake my husband out of the coma, and thank god i had because if I hadn’t known I probably would have reacted badly when he started spewing weird conspiracies etc right after the first wakeup.
That is great your husband is doing so much better now! I agree that it sounds like delirium. When I was first waking up, people who bent over to try and hear me whisper (trach) looked huge and terrified me. I pushed them away. Only a few feet away they looked very distant. It was probably 4-5 days before I really knew where I was and what was going on, and even then I was asking about events I had dreamed that never happened - they still seemed more real than reality itself.
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