sleepiness or agitation

[Lunalg]

hi

My husband suffered a brain injury in a RTA on 24/11/3023. He gained consciousness about 2.5 weeks ago. He is still in ICU being weaned off his vent with an trach. Over the last 5 days he has been not sleeping through the night and therefore being very sleepy most of the day time. When not asleep he seems agitated and is trying to get of the bed and pull at his tubes. They are medicating him for sleep but it’s having minimal effect. Is this normal? Is so, how long does this last? Any advice greatly appreciated.

[Sepsur]

what you are describing isn’t unusual - many of us experienced the same.

ICU delirium meant I was reluctant to sleep, I believe I was also chemically’wired’.

ICU is very noisy at night - they do obs. regularly which messes with sleep hygiene too.

[Clunk]

What sepsur said. My husband exhibited similar behaviour when he had icu delirium - though he was he sleeping at all because he thought all the nurses and doctors were torturing him. You can look through my past posts. I found it by far the worst part of everything so i really feel for you.

I’d suggest two things:

- talk to doctors about whether he has icu delirium (something like 90% icu patients get it) and look up ways to help: stuff like bringing in pictures from home, talking to them about your shared live experiences etc. i also recommend doing this because in my case there was a consultant who thought my husband had a psychiatric disorder (shizophrenia) and i had to convince him it that from my pov he was exhibiting all the basic symptoms of icu delirium. You know your husband best.

- movement - wnen you look into icu delirium you’ll see that supporting people to move as early as possible is one of the most effective tools for breaking them out of icu delirium. For example, they would move my husband from the bed into a chair and that was it initially but helped. I would also massage his legs and ankles and move them a bit to help.

Wishing you all the very best

[Clunk in reply to Clunk]

Forgot to say with regards to movement - in my experience you have to push for that. I asked them initially to help him move - they suggested into a chair- then later on i asked them to start PT early - they have PTs visit patients in icu

[Lunalg in reply to Clunk]

Thanks for your response. They have advised they are treating him with medication for delerium. I do think movement would be good and maybe a voice box on his trachy so he can tell us how he’s feeling but they use the weaning and his sleepiness as excuses to stall his rehab. But yes very upsetting and frustrating for us all. He seems awake and agitated if a night when I’m not there and sleepy if a day when I’m there so difficult to provide him with reassurance.

[Clunk in reply to Lunalg]

It sounds like you already have a good sense of what might help so I’d just say to definitely keep bringing those two things up - you’ll wear them down. I know that I was probably incredibly annoying to the staff at times but in hindsight i’m so glad I was persistent.

Maybe you suggest it as a ‘let’s try it just once’ or alternatively i also found it helpful asking them what their plan is beyond the current or next step - that could be a way to get to ‘if he’s feeling x on n day then we can try moving him into a chair’ then asking how they intend to get him to that step of feeling x which could be like changing medication dose or xyz. And if they say we just wait, then something else i did was say stuff like ‘but according to NICE guidelines mobility and being able to interact with others is important for recovery’ etc. NICE guidelines are the recommendationa for health care professionals that are put out by NHS nice.org.uk/guidance/cg103/...

And in regards to providing reassurance - you’re doing as much as you can and that’s already HUGE. Even if it’s a few hours out of a day, your husband probably doesn’t have a good sense of time right now anyway, mine didn’t.

[ZanderB]

Hi Lunalg

I'm just an ex-ICU prolonged-stay patient, so I'll defer to the medical experts but from what I gather what you describe is quite 'normal', however abnormal and worrying it is.

I spent 3+ weeks in an induced coma with, I'm told, numerous failed attempts to wean me off the sedation and aggressive reactions to it. My recollection is that I was just existing. Time passed but I could do nothing to pass the time except exist. No reading, no watching any tv, no listening to anything (and no visits because it was late 2020 lockdown). My goodness I must have been bored out of my mind but I think I had been through too much to even know that.

And the noise and lights and measuring of vital signs every 3 hours (I think) in ICU makes consistent sleep difficult. I recently looked through my hospital notes and was amused and not surprised to read that on a few occasions once out of ICU I 'withdrew my consent' to being woken in the night to have my vital signs checked (blood pressure, oxygenation, pulse...). Probably not the best idea in hindsight but that was how desperate I was not to be disturbed during the night.