My son has been in icu since 6/12/2020 he came out of a window slipped no more than 10ft high. Sustained severe injuries to his body but no head injury. Was put into an induced coma for a week he now is off life support but has been heavily sedated and they have been reducing his sedation for 3 weeks now and he is really agitated and confused he doesn’t understand where he is or anything. Is this normal as I’m worried he does have a head trauma and wasn’t picked up on the scan. I feel something isn’t right as been no change in his behaviour. I have only been allowed twice to the hospital in nearly 4 weeks once for an hour second time 20 minutes. They want him off the sedation as much as possible as he needs a shoulder replacement and this cannot be done with his agitation as he has to keep his arm straight for 2 weeks after. I’ve spoken to doctor twice and have told me that operation can’t be done until he agitation is under control as he keeps trying to climb out of bed. I’m worried sick as the only positive right now is he is out of a coma.
Have any of his team talked about ICU delirium? Not all critical care patients get it but it is fairly common. I certainly had it for a period of time - in my case - one day I was delirious and the next day I snapped out of it. Some people have delirium that is more spasmodic and comes and goes for a time. Others have no symptom what so ever. Agitation can be a sign. I’ll include a link.
Look for the delirium pdf - further down the page this link takes you to.
I have looked it up but just concerned it’s gone on for so long he doesn’t respond to commands. When they brought him out the coma he was mumbling and he tried to stick his tongue but now he does nothing. I except he can’t talk as he fractured his jaw and later on he being having an op in that but he can’t open his eyes much. He broke his shoulder his foot , ribs and severe abrasions to his legs feet and arms. He has done a lot of injuries from not a big height and he is 6ft himself I can’t get my head round it.
I live in hope and try to keep positive. It’s horrible I can’t be with him as feel if I was there I can reassure him and calm him down. But in this current pandemic it’s impossible
Have you asked they repeat scans of his brain MRI, CT scan, X-Ray every possible form of imaging process they have should be carried out again. However if he is still on medication perhaps his behaviour is related to that more than just icu delerium. It does sound like there could be a brain injury but I'm not a doctor. I think that needs to be looked at and into again as he may have a hairline fracture to his skull, or concussion which can cause lasting problems if undetected, or a tiny bleed on his brain somewhere. Or he may have had a stroke at the time of his injuries that went unnoticed. I came out of my coma 25th Jan 2018 aware but very confused, then fell back into it until 27/28th and was extubated, had delerium for 2 - 3 days which came and went, but paranoia kicked in big time when they moved me to a ward way to early, and now almost 3 years later it can set off. Your son's body has been through huge trauma, any medications may not be reacting well with him, he may even be dehydrated. Had he taken any drugs before his fall? Brain scans can miss very small areas of damage. I'm guessing also doctors, nurses masked up due to covid, which won't help at all. For almost a year after I left hospital my behaviour and thoughts were very off, didn't know who or where I really was at times, but was at home and functioning, but not like my previous self. I feel part of me is still submerged in my coma, and at times like I am still in it. All scans of my brain have shown no damage. I'm convinced they've missed something every time because it is so small. Give your son chance, it is still very early days. Not being able to see family doesn't help either. There was a flu pandemic when I was in ICU, only got to see my Mum, and spent a lot of my time alone drifting in and out of reality in icu, but nothing scary until moved from icu. He may be in a lot of pain, I had to relearn everything, that is frustrating. Was lucky I relearnt quickly, but being unable to help own self can cause behavioural issues and massive melt downs from sheer frustration and confusion. Demand to see your son more often. Insist more scans and detailed blood tests are carried out. Ask names of all drugs he's on and look them up online, and importantly take some photos of your son, those are going to be helpful down the line for him. Have them check his vision, have them ask him if he can see/hear, if he feels dizzy. My vision was incredibly blurry and I couldn,t understand what some people were saying at all, it was as if they were speaking mumbojumbo, or alien language, and I was submerged in deep water or they were taking to me from very far away, like I was on top of a high mountain and they were 5 miles aways on the ground yelling up to me, or vice versa at times. Everything is confusing. Give him time, recovery can take as little as 6 months or less to 12 months plus. I'm still recovering almost 3 years later, but in now way am I in the state I was. Stay possitive, give him earphones and music to listen to, give him his mobile phone if he has one back, give pens/pencils and lined paper as maybe communication verbally is what he's struggling with and getting very frustrated about. Give him actual photos of family to look at and hold. If he has, or has had a catheter in, he may have an infection from it. I did, it made me very poorly hallucinating and feverish. Stay strong.
Thank you so much for your response it’s been really helpful. I’m sorry you had been through this I can’t imagine how you was feeling. I am going to contact PALS as they help relatives get to see there loved ones, I am airing for an update from the doctor and I have put on my list of questions that I want another scan done as I’m not confident on the 1st one which was done in the day of the accident. I know every patient responds different to meds. When I saw him the first time a week after and he was out the coma he kept saying he was hit and dragged by a car and there was an incident in that area of that evening of a car speeding about. He had only been in his new house for a week before this happened his house mate said he climbed and slipped out the window so I’m not sure if my son was having some hallucination about the car but I question it because of the injuries he has sustained. I know at this present time it’s about getting him better I just keep thinking something else happened and it would help the doctors more but on admission he came in with fall from window. Thank you so much for your advise
PALS are very supportive and you are right to question your sons injuries and what he said. It may be he saw a car speeding from the window he fell from, or whilst or immediately after falling. And you are right to push for further scans./tests. My coma was short in comparison to many other peoples, but it certainly messed with my mind, and has played havoc with it, and my body too. It turned 3 years ago just a few days ago since l was put into my coma, many say oh forget it, don't go on about, or it was ages ago. To me it is fresh and not ages ago because of gaps in my memory and time being lost in my days I can't account for. Weeks pass and l have little to no recollection. Have to ground myself by writing things down which helps make me aware of how much time has actually passed by. And nobody should be saying those things to me, they haven't experienced what I have.Someonne mentioned in the comments about a toaster watching/following them. I had the same experience with certain objects, and was very suspicious of people. Everything and everybody seemed glitchy like a tv going haywire in a creepy film/movie. My family didn't quite seem the same people l remembered. I saw gaps in things they said which made them seem like imposters/clones. Looked like my family, but something off about them. Still feel and get this even now. Objects and people can be threatening and incredibly evil withiut just cause or just happen suddenly. I sen shadows and small dark objects out of the corners of my eyes and often feel uneasy and feel a malevolent presence around as if I'm being observed. It is very creepy, l'm level-headed, not paranoid but it could induce paranoia very easily even in the most level headed. I too had a problem with clocks, they would scramble, the numbers dance around and jump out at me. That doesn't happen now, or if it does like the other things I'm maybe just accustomed to them now. Though l do often feel spooked, and can't always make sense of the language "my own" that people are speaking in, speaking to me in, and often everything feels hushed around me, even by strangers. I'm used to it, and know all this is related to the coma. My pesonality is different now, as is my thinking. Humor wise much the same I believe, but not entirely. Emotionally I'm different, feel empty like me got left behind in the coma, a significant part of me left behind submerged in my coma, and I am standing outside my body unsure If I'm really here whilst I watch everybody else running about and they don't appear to see me. The world sped up and I'm in slow mo observing from a distance.
I hope your son is a little better now, showing some improvement. Pals and here may be helpful to not only you, but eventually to your son. Keep a diary of exactly what your son says, and push to be able to visit him more often. Also push for physiotherapy or massage for him, even if done in the bed. And give yourself some tlc. Xx
I’m not a medical person but was sedated / ventilated for nearly 2 moths following pneumonia and a heart op. It took a long time for me to come round. I was agitated to say the least and kept pulling my tubes out. In my head I escaped a number of times and my bed was in a motor museum I didn’t have the strength to to get out of bed!! There is nothing normal in icu as everyone is effected in different ways but what you describe is not uncommon.
PALS can be very helpful as they know who to speak and what it all means.
I had similar dreams about being in a motor museum and dreamt about mechanics working on me like an engine, and I also kept getting agitated,pulling wires out of myself and threatening to walk outI keep having flashbacks and hallucinations now 6 months on but still have no memory of the event( cardiac arrest and heart attack,followed by ventilator pneumonia)
It's helpful to hear your experience as I'm still trying yo put everything into perspective
Back in November 2019 I was admitted to the local hospital after being given a "telling off' by my GP. I had a heart attack there and caught pneumonia they also found an issue with my 8 year old replacement valve!!! I was discharged. Within days I was back in with pneumonia and suspect sepsis and they discovered that my valve was rapidly failing. I was blue lighted to the QE in Birmingham and despite being seriously ill and in ICU they replaced my valve before Christmas. I subsequently had a trachy and was fed by tube, in all I was sedated/ventilated for nearly 2 months. I came home mid March.
I have lost about 3 months memory from before ICU. This troubled me a lot, some people said "accept it and move on" I couldn't do that. I went on a course (I paid for) of CBT and amongst other things I started to understand the way I felt about that loss. And now in many ways I accept it but it troubles me that there is a significant memory that I don't know about. Even when people tell me things I still can’t remember them.
I have no memory from when I was sedated and I'm not bothered by that subject to what I say below.
After ICU my day to day memory is poor, its getting better I may only repeat questions 2 or three times a day much to the relief of my wife.
I had tremendous problems with the clock in my room which had 3 faces, told lies and got me into trouble. When I came home my wife had bought a new toaster and that bloody thing would watch me when I went into the kitchen and follow me around. I developed a "non avoidance" strategy to deal with this which works and for other things.
As to hallucinations well there is not room here .. but a plumber put a tube up my bottom and also put a camera down (TOE). The ward was an airport, the staff were always having parties, I escaped a number of times once to Cheltenham, once to Bristol and another to the Brecon Beacons. I arrived in hospital on a long boat because the ambulance had broken down and I was treated under water. The problem with the hallucinations is that it is sometimes really difficult to tell whether they are based on reality or not - obviously they are not - so the next question is what are real memories and what are not. To resolve this I am writing them down so that I can have package of hallucinations separate form memories.
I am now quite an emotional person (72 year old male) but can cope with Ambulance and hospital programms but can get caught out. If I talk about my experiences that too can be emotional but Im never too sure when that might happen - am I bothered - no.
My personality has changed - I used to have a wicked sense of humour but now its eveil. My brain doesn't control my mouth and even if it tries I take no notice - am I bothered - no.
Its now 12 months after the op and nearly 9 months after coming home. I have put back on all the weaight I have lost, I can eat most things (swallowing is ok) my laugh is different and I have probably got pulmonary fibrosis caused by ICU trauma or my arthritis drugs or both - an I bothered - not really.
I was lucky in that I found ICUSTEPSChester, not in my geographical area who not only provide support to patients who have been in ICU but also their relatives (seperately). I also do chair exercises twice a week and yogo twice a week. All these are provided via zoom.
If you want to ask specific questions you welcome to ask them here or using chat.
I suffered a cardiac arrest and heart attack in May and was put into an induced coma for several weeks. When I came round I was very agitated and paranoid. I had no idea Where I was or what was going on.no memory of the event and had been having many strange dreams/hallucinations, made worse by the fact I couldn't see my wife and family due to covid restrictions. I am still suffering from flashbacks and not sleeping well,but I'm not so agitated.It took me many weeks to understand what I had been through,and still I'm coming to terms with it.
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