Hi my dad is now 9 weeks ventilated. Sedatuves have been reduced and he eventually opened his eyes and was obeying commands as much as possible.
The main issue now is he is experiencing extreme delirium, agitation.. as in they have given him meds to alleviate the issue but with the amount of drugs, sedatives he had been on they are taking little effect. He is even trying his best to get out of bed.....totally trashing his arms and legs about( now muscle movement is good and even amazing at this stage after been sedated for so long but not like this)
Has anyone experienced this before? Will it continue as long as he is ventelated, it doesn't look like he will be c owing off the ventilator any day soon as his lungs have extreme damage and his breathing is not good enough..
We want to try refrain from full sedation again as it is just a vicious circle ..
Any advice is welcome.
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Ted2020
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It is normal for this to happen as although they have reduced the sedatives they are so strong those used that they continue to still have effect for a while after . It will pass eventually, my dad was like this for almost two weeks and he never slept . I think it’s such a scary situation and everything that it’s happening around them is so real to them .
My dad doesn’t remember much of this time in ICU , he was ventilated for 73 days . However he’s told me stories of what he encountered during the period of coming back to us . It will wear off in time , my dad was able to start his rehab and physio while still ventilated and after the sedatives wore off he progressed .
Upsetting as it was to listen about on our daily phone calls and witness over FaceTime calls he did have lucid moments in between . Dad had covid back in March and it’s wasn’t as busy as it seems now . When the nurses where available they sat and held his hand which calmed him . X
Yes more than anything we would love to be able to sit with him. It is just so horrific to think what he is experiencing ... They have slight increased his sedative to no effect on him..they have said he is almost immune to all the previous drugs at this point..
He has had lucid times inbetween but now he will just exhaust himself, to the point where he is so weak , then sleep and start again.
I just hope that the do cross try refrain from sedation. Fully again ..
Follow this link to this information page, if you scroll down, there is a pdf on ICU delirium. It does sound like your father is experiencing hyperactive delirium. This doesn’t happen with all ICU patients but it is commonplace.
In my case I had it one moment and then it was gone, I assumed I was asleep & dreaming everything up until that point. It is very very scary for most folk.
It is exacerbated by the sedatives, so you are right it is a vicious circle.
There are a few different contributing factors like sleep deprivation, organ function, toxin levels in body etc etc.
Helping a patient orientate & removing sedation usually works but it can take a little time. My wife thinks mine lasted about 11 days - I have no idea because I was still in a coma and as far as I’m concerned (mentally) ‘that mad world’ lasted years.
Yes all the above sounds about right.. he was so exhausted the other day after 2/ 3 days of all the agitation he slept and settled for 1/3 days then it returned again
Its very hard to know he is going through this and so much more and we cannot be there to see him through it..
Please take comfort that in the great scheme of things, it is just another hurdle and it all is over fairly quickly. Recovery after critical illness is a long winded affair.😊
The helplessness you are feeling must be unbearable / can you FaceTime? Hearing your voice may help to orientate him.
We have been trying as best to see it this way We ring every day, and the nurse leaves his phone beside him so we can talk. We might actually get to go in this weekend. I was going to bring some pictures which might be something else for him to look at other than the ceiling all day... I know it won't be easy to see him like that but nothing compared to how he is feeling.. x
Thank you..he is struggling to get his breathing right still ad his lungs are so damaged..theybhave said they don't know if he will even make it off the vent... we know one step at a time .xxx
My family made a picture board which included all of them, wife , 5 children, 12 G.children, 2 G. Dogs & 2 G. Cats and every day the staff asked me questions. It was really difficult to remember their names and to give them some information - sometimes it was really upsetting because I just couldn’t remember. And I had visitors every day!
That must have been a very difficult experience for you to go through.A picture board sounds good , I will make one today we are hoping to get in this weekend , I haven't been in since Christmas.
Any recconendations I will take as we would do anything to help..x
Please be prepared for the unexpected! Not saying this will happen. He may be horrible towards you, I was and I had no idea what was going on although I appeared to be coherent. He may tell you to go away - don’t. He may think you have come to hurt him and he may tell you that the staff are trying to kill him. His hallucinations are real don’t expect to convince him otherwise but you can try to placate him. He may not know who you are or that you should be a different age.
If you can (and allowed) take a photo of him this may be very important for him later on. I have photos which are treasured.
I thinkni am prepared, however I cant say the same for my mam, even though I have explained it. It will be hard.He can't talk as such due to the tracheostomy, however makes sounds etc. But he is definitely experiencing hallucinations ..he has communicated this.
The trachy adds an extra dimension I got very frustrated because I had difficulty communicating. When writing my words were back to front and in the wrong order but I knew what they said and no one else did. Also for short period of time they fitted an artificial voice for me
Hello, as a few have already said, this is a normal process of long term ITU admission, they have been heavily sedated with very powerful medications, it will take sometime for it to come out of his system. It's absolutely terrifying to witness, you feel they have been through enough already. My husband was put into an induced coma on the first wave for nearly 6 weeks, he was lucky in a way as his trachy came off about a week from lifting the sedation, however the delirium lasted for weeks . He was moved out of ITU into the stepdown ward and he doesn't recall anything from ITU and not much on the step down , except really the last week on stepdown.
His mobility was exceptionally poor so was moved to a rehab centre for a further month and some days he was still a tad confused .
When he was on the stepdown ward, he became very aggressive and ripped out all his tubes, he was acutely rude to the critical care staff, in my presence , I was mortified . They shrugged it off and said it's just the meds .
He was very angry and aggressive to me and has no recollection of any of this . He continued to rip the tubes out, so they put mittens on him, he ripped them off too - I laugh now, as this determination probably got him through his fight for live.
We were very lucky, we were able to see him on the stepdown ward as he was the sickest on the ward, the consultant allowed us in.
I took a memory board of family and friends photo's . took in his aftershave and sprayed my perfume onto some of his clothes , just little things that would trigger happy memories for him.
It's a rough ride and it's all part of the recovery process, please take comfort from the fact, its not a great place he is in, he wont recall any of it .
HISounds like your husband has been through so much. It is de terrifying to watch someone so close to go through what they are experiencing.
I took your idea of a photo board and I sent them jn to the hospital today. Thank you every little helps.
He was resedated 2 days ago as he was extremely agitated (to the point of trying to get out of bed) and was not breathing properly with the ventilator. They are reducing it already although slowly.
Your husband came off the ventilator quickly after sedation reduction . Dads lungs are his main issue and his breathing needs to improve to which is making the weaning process so slow...1 step forward and 2 back.
Yes we call and ask the nurse to put his phone to his ear and we talk even when he was fully sedated. He had heard us when he was awake and even tried to talk.
We known it will be an extremely long road ahead and thats if we are lucky... thank you
I hope your. Husband has a continued safe recovery.
It all sounds promising with your dad with the sedation reduction. He was on oxygen for several weeks via cpap, then a mask slowly reducing to nasal . The healing process of our bodies is just simply remarkable .Yes the nature of ICU care is one forward 2 back. My husbands lungs were dreadfully consolidated, the CT scan we saw when he was in ITU was terrifying , the resembled a net curtain .
Fingers crossed for a much better day for you all.
Fingers crossed for sure, we got off the phone today and again the nurses said that they think difficult conversations are going to have to be made in time, as they still do think he will not come off the ventilator.
We are reluctant to have theses conversations as he has woken up previously and brain ct etc were all fine, yes he was extremely agitated at times. But he is still there..
Its his lungs are his issue they don't see him being able to take his own breaths sufficient enough ..
He is 11 weeks in icu with over 9 on the ventilator ...
Unfortunately, what you describe is quite common. Sedation and the whole ICU experience is so confusing, the combination of medication and lack of sleep is horrendous. Although sedated, its medically induced so he will not have got the regenerative sleep that we all need. Although he looks awake, he may not be totally aware, and may not even remember this after he's recovered enough. I spent time in ITU with meningococcal bacterial meningitis, sepsis and pneumonia. The hallucinations can be very weird and upsetting, I was in a temporary psychotic state for around three weeks. Although his behaviour may sometimes seem way out of character now, I know it may be difficult but try not to worry about this. As I've said he'll likely not remember, this is all unfortunately quite normal, not for the relatives of course, but do talk to this nurse.
If a critical care diary isn't being kept by the staff, I would recommend doing this yourself, you'll feel more involved and it will help making sense of it all, if you need to afterwards. Full recovery once home is unfortunately a long haul. I got a lot out of writing about my "journey" afterwards, it really helped. That eventually turned into a book that I published just before Christmas its called Eight Seconds of MenB, not now but if you feel inclined please read it, it will give you an heads up on the sort of thing that may happen, but believe me keep positive at all cost. When you and your Dad are ready go to the ICU Steps meeting once they start up again you will find one locally I'm sure. Always be positive and the very best of luck to you both.
Hi Many thanks for replying, uou have been through so much. Dad is back now almost fully sedated .. he was breathing rapidly on and off so they sedated him again.... we are being brought in today to discuss his case where we almost know what they are going to say.. our issue is he was awake and responding only last Thursday... surly we have to give him more time even if they think not....
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