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Dealing with waking up from an induced coma

Dear readers. Some of you might have read the post on my dad's severe pneumonia and induced coma this February. He has endured so many ups but also terrible downs as did I being time three times he wouldn't survive. Well he is still here and though still with ups and downs, slowly waking up out of his nearly two month lasting artificial sleep. He is struggling ... sedation makes him forget what has happened to him resulting in various panic attacks evert time he wakes up after sleeping. He cannot speak due to tracheostomy nor can he move. I feel very upset seeing his hartrate and bloodpressure rise lang times. It's a difficult balance for his doctors and nurses to try and stop sedation completely. Can anyone relate? And what can I do to help him? It's hard of course to see him suffer.

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Hi Debooorah,

I spent almost 2 months in & out of induced coma's 5 years ago, I have no memory of that time at all even though I'm told I was awake at times, for me it was like being in a virtual world at times very scary and at other times just plain bizarre, waking up to find a tube strapped to your throat, unable to speak and finding it difficult to move because of so much muscle wastage can feel pretty terrifying.

My wife kept a diary of that missing time and on reading it some months later I'm glad I can't remember any of it, it was very difficult to read that no one thought I would survive, but like so many other survivors on here we beat the odds.

Coming out of sedation can lead to hallucinations as so many drugs are still in the body, my advice would be just be there when you can to reassure your dad as familiar faces and friendly voices talking about daily life at home etc. can help a lot in the early days, recovery can be a long slow and sometimes painful process as the body has been through major trauma which can take years to fully recover and come to terms with, but the community is always here to help, as they say we've been there and got the tee shirt.

I hope your dad continues to make a good recovery and you look after your own health as he will need your support when he finally gets home.

Bill  

 

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Thanks Bill xxx

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Hi there - I think I posted a few weeks ago to thank you for sharing your post, as I found it only a week or two after my Dad suddenly collapsed (I broke in and found him) - and was admitted to ITU with ARDS, severe sepsis - and then a few days later acute kidney failure.  Your post gave me comfort that other people were hanging in there too, and that I was not alone in how I felt - thank you so much for that.  My Dad was ventilated for over 3 weeks, and then had a trachie, and later a mini trachie.  I sat with him every day  he was asleep and for many of the nights too, not because it necessarily helped him any, but because it meant I could avoid panicking at home about what was happening when I wasn't there.  I too found the process of sedation holds very frightening, particularly when you could see him being frightened but I realised that this was the time I could actually do something helpful - and I spent this time holding his hand and talking to him clearly about how I knew it was really scary, but that I needed him to try and stay calm, take big breaths and trust me - we often tried to breathe slowly together and this seemed to help him focus.  It's not much I know, but we eventually got to a point where I could ask him to take his hands away from his face and not try to go for the tube, and he would listen and put his hands down - which meant we did not have to sedate him again - in this way, we gradually lifted the sedation over a week or so.  We also played his favourite audio book and music using a speaker in his room, and I often read to him from magazines and news papers.  I know that many people say under heavy sedation that patients cannot hear, but even the doctors and nurses observed that when he heard my voice, as opposed to theirs, his vitals seemed calmer and he seemed more inclined to do what he was being asked - I guess just the small thing of having something familiar in a very scary situation helped somehow.  Hang in there - look after yourself (as you know it will be a long recovery journey and you will need to be fit and well to hep with it) and it helped me to ask questions of the medical team so that I understood where the boundaries of all the vitals where, so that I didn't worry if they were not worrying about an alarm or something.  We're fully awake now, and on a renal unit (after another trip back to ITU last week after a bleed) and dealing mainly with the consequences of a long stay on ITU and the aggressive treatments they had to use.  Try not to expect too much, it took my Dad 10 days to speak properly once the trachie was removed, and his swallow reflex is still unsafe so he can't eat or sip water.  We have lost pretty much all his muscle strength and will need to continue physio to build that back up over several months, and we have had bumps in the road in the form of new challenges like the stomach bleeds resulting from so long without proper food, and the stresses of all the meds, but we take each one as it comes and try to accept that each setback means taking it one day at a time.  My thoughts are with you - I know what a horrendous time it is, but the teams in ICU are the best and they will I hope, support you through what is very familiar territory for them, even if it's not for us xxx  

p.s - one other thing I have done (when he was able to talk) is to write a book for him of all the things that he believes have happened, that haven't (things like being attacked by the nurses and visited by people who haven't visited him) - he has some very vivid memories of things that just haven't happened, and it helps him to understand which are false memories and which are not, when he is able to look in the book

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Hello Debooorah,

adding to what Luckyone and Rachel wrote: the process of waking up is a slow process during which the person will have times where he seems "normal" one moment and in a crazy dream world the next. Looking back even the weeks after stopping the sedation drugs were more of a cloud than real memories to me.

It took me one month to realise that I did spend more than - what I thought was - two nights in the ICU and that I was on a ventilator. My friends an family were surprised I couldn't remember when they started to talk to me after I was back home. (It came to an equal surprise to me).

So do not expect he understand the situation, the place (ICU), the machines, the people, even if he appears so. What he will understand that he is helpless and will feel secure and calming to have familiar voices around him. Read some of the stories on ICU steps what people imagined, it is hard in this stage to distinguish between dream and reality. For example one of the memories I have is that I thought I was in a machine, stuck between two wooden plates, pressing my body together in a rhythmically. This was of course the ventilator forcing air into my lungs.

Don't try to make to much sense of his panic attacks, but be around, talk to him much so he has a familiar voice.

I wish your dad all the best you all the strength to go through this.

Thomas

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Hello there, Thank you for sharing your thoughts and  I really appreciate reading it from a family's perspective because I was a patient in intensive critical care for more than 4 weeks myself, and then another 4 weeks in acute surgical care unit. I became very ill as a result of Sepsis / Septic Shock as a result of a perforated bowel from a surgery. When I was in ICU, I also could not talk nor move. My hands and ankles were bound to keep me safe. I also could not hear - for some reason I have a little hearing but slowly my hearing s getting better. I was in ICU from mid July 2015 and eventually discharged mid Oct. 2015. During my time in ICU critical care unit, I was comforted to see my family and friends dropping by and even though I was under sedation, I could feel their presence. They held my hand, made my bed. I felt all these activities. I am not sure if your dad can feel the same but maybe he does and I hope he can feel your presence and love. It is difficult to see a loved some suffering so much. The best way to help your dad is to be there, just sit by his side, hold his hand and talk about  all the good times, talk about his future and recovery. It will get better. Everything takes time. I never thought I would recover, but here I am, 8 months later, living and trying my best to recover. It is still challenging to live each day but I hope things will get easier for me soon.  I wish you and your dad all the best.

Haly

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Thank you Haly. I do hope you will keep having a good recovery. All the best.

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My brother is in the ICU after a massive heart attack followed by cardiac arrest. he was in an induced coma for 8 days and woke up 2 days ago. He is experiencing similar hallucinations so this post and replies are somewhat comforting. Thank you

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Just hang in there. I know now that the human body is capable of allmost everything. Together with mindset it's a recipe for a good recovery. All the best for you and your brother . And I hear you. Through what for me was the post difficult time in my life, this site was a huge support. It's what kept me hoping and going.

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Hi Deborah, my partner also suffered coming out of his induced coma, he spent 7 weeks in ICU, he to suffered whilst trying to awake his personality was totally not him, to cut a long story short we had a meeting with his ICU Dr, a translator ( language was also a problem) and myself the Dr arranged for a change in my visiting hours so that I could stay for long periods of time whilst they reduced sedation to bring him round, I genuinely believe that this helped in the end, it took many attempts to get the reduction in sedation to a right level that enabled him to wake up slowly! We are slowly rehabilitating at home now! You will get there! Lynn x

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Hi my dads been in the icu for 26 days my dad had a cardiac arrest and a massive stroke. He was ok a week ago but then he had internal bleeding so back on the ventilator for the second round. Now he's off pain meds and sedation since this morning he moves around and his eyes are open but he not looking at me. What's going on ?

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Hi guys don’t know if anyone is here that will reply to me ??? Please would be an hounour were in such a position like were lost !!! ???

dad had a heart attack and Ben in the icu since it’s been 5 weeks in total

and Ben off the ventelator and sedation for 1 and half week off know and his like breathing mostly by himself but getting oxygen know only and things but still not waking up properly like we’re all going mad here don’t know where to go or what to say he means to much to the family to let him go !!

After all that know he opens his eyes know and then but not fully and sometimes squeezes the hand but when he looks at you his not focused or conscious his eyes sometimes goes side to side with lid closed ??

so we’re just lost can any body tell us or help answer our question please we just want Dady back and we’re so scared thank you for everything and understanding i look forward for all your reply thank you so much xxx

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Hi guys don’t know if anyone is here that will reply to me ??? Please would be an hounour were in such a position like were lost !!! ???

dad had a heart attack and Ben in the icu since it’s been 5 weeks in total

and Ben off the ventelator and sedation for 1 and half week off know and his like breathing mostly by himself but getting oxygen know only and things but still not waking up properly like we’re all going mad here don’t know where to go or what to say he means to much to the family to let him go !!

After all that know he opens his eyes know and then but not fully and sometimes squeezes the hand but when he looks at you his not focused or conscious his eyes sometimes goes side to side with lid closed ??

so we’re just lost can any body tell us or help answer our question please we just want Dady back and we’re so scared thank you for everything and understanding i look forward for all your reply thank you so much xxx

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My son is 26... he is on ventilator- cardiac arrest, pneumonia, seizures, it's been 36 days. They are still reducing his coma inducing meds. He's had moments of somewhat lucidity, unable to move fingers or toes yet, opens eyes on command occasionally, pentobarbital induced, then versed, then prpphol, now phenobarbital and clonopin with 5 other non sedating seizure meds, reacts to pain (sometimes) stares into space. He was down for about 7-10 minutes while in Icu on ventilator support and cpr. He's showing more signs of being awake- still on ventilator support- sometimes, I feel and see the connection and recognition, he cried... sometimes he stares at the ceiling. Anyone out there have any input. I'm living on faith ( as I think he is) waiting for all this medication to work it's way out of his body.... what can I expect?

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I know this was a few months ago, but my boyfriend who is 23 is going through a very similar deal. He has Autoimmune Encephalitis, he was sick for about a week, we thought he had a stomach virus, until one night we were laying in bed and he woke me up having a seizure, he had never had one before. He had plenty more after that, when we got to the hospital they transferred him to after they were getting no where treating him for Meningitis for a week, he was having a seizure every 5 minutes, so they put him into an induced coma for a week, he has been off the sedation for about 3 days now, and hasn't had anymore seizures, I think they finally found a good balance of medication to keep those at bay, but it's been crazy watching him wake up, he stairs off into space, and just now started looking at us directly, doing some commands like squeezing our hands when we ask, and he can turn his head some now, and move his arms, they are weaning him off the ventilator, he has a trech tube in, and has been diagnosed with pneumonia now and is having a time coughing up gunk out of his lungs. He has been crying also, it's been very hard to watch.

I was just curious as to how things ended up going with your son... because i don't really know what to expect from here.

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First of all, I hope your boyfriend is doing better and that this response is too late to hep you. And I don’t know if this will help, but I woke up on dec 3 after being in an induced coma for twelve days. In my case it was because an infection had caused 85% of my airway to be compromised, I had emergency surgery and a tracheotomy because they were not able to intubate because of the infection.

While I had some dreams that were a little scary, they really weren’t that bad. I think it was actually a little worse for me when I woke up. This seems a little different than what other people are writing about their experiences.

I could tell I was in ICU but didn’t know why I was there , why I couldn’t move my legs or speak, and why it was difficult to move my head or arms. This was the most frightening thing, and i’m Sure that if I didn’t cry, I wanted to. The only thing that made sense to me was that I had been in a car accident and I was afraid that I was paralyzed ( and that someone may have died in the accident) . I knew from the calendar that I had “lost “ days, since I didn’t remember Thanksgiving, but that was it.

It took about a day for someone from the hospital ( G-d bless her) to ask me if I knew where I was and why I was there, and just having her tell me that I had been sick and not in a car accident made me feel better, because I knew that sick could be recovered from.

Remember that the trach is going to make communication very difficult until they put in a device to let him speak , and which they will probably nOt leave in all the time. It is very frustrating not to know what happened or to be able to ask, and to be honest, I was a little afraid to ask anyway.

I would suggest trying to find as many ways as possible to give him opportunities to communicate. If he is not speaking yet, get him paper and pen ( recognizing that his handwriting will probably be awful), ask him yes/no questions as much as possible about what he might want or need, including if he wants different types of information, and ask people who work in the hospital ( doctors, nurses, therapists) to tell him what to expect in terms of recovery, and to ask if he wants them to explain what happened to his body, why they chose to induce a coma , and what to expect from recovery. And as for friends and family, you might wAnt to talk about future plans as well, to reassure him that there will be a normal future.

Of course everything that I am suggesting is based on my experiences, and feels very rambling, but I guess I am trying to help suggest whag he may be going through. As hard as watching the tears are , they may be frustration as much or more than pain

I still don’t really understand why the decision was made to induce the coma, and don’t even know who to ask. My husband says it was because they didn’t want me to remember the trauma, but what I read online seems like comas are normally induced when there is a risk of brain damage, and I don’t think I had that issue . I presume the decision was made by an intensivist, but the only time I saw one I wasn’t able to talk and was too scared too ask questions

in my case, I was moved off of ICU within a day of waking up, and down to a step- down floor where I still had 24 hour monitoring my a lot of machines, and a single nurse was assigned to me and one other patient who shared my room, so the nurse was in the room pretty consistently It was probably very early for me to be moved, since I was conscious but couldn’t communicate or do anything to take care of myself at all. But I wrote down that I wanted to be out of ICU because for my personal peace of mind I felt like as long as I was in ICU i was on the verge of death That is not even close to the truth, but it was the way I felt Once they moved me from ICU, I felt more hopeful that life would return to normal But it was still only after I was able to walk to the door of the room with the physcial therapist, and look at other people, that I really believed thAt life could return to normal

In my case, by the time I understood enough about what had happened to ask questions, most of the doctors involved in the surgery and induced coma were already done with me, and it wasn’t until I saw the surgeon ten days after I was released from the hospital ( and a full month from the surgery) that I was able to ask some questions. After I thought about those answers, more questions came up, but of course I then had to wait for my three month follow up to be able to ask them.

I guess I am lucky that I don’t have a chance to ask more questions because I have had a full recovery. I had a few months of physical therapy to deal with , but I am now almost exactly I t he same physical condition that I was before

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Thank you so much for the reply, you have given me much hope! My boyfriend, Matthew has been awake for a week now and is becoming a little better each day, and it's nice to watch. He to had a trechoscopy, and I can tell not being able to talk is really getting to him, he is nodding his head 'yes' and 'no' now, and is gaining more control over his arms and hands, however he can't wrote right now asnthey have his right arm in a splint because of an IV he has in it. His pneumonia is going away, although he still has a bad cough, you can tell he is getting better. I am a little worried about his mental stability, he is answering questions okay but there are just some things he does that worries me, he stairs off into space some, and seems to ignore me, I don't know if it's due to some of the meds he is taking making him some "loopy" or if he just gets tired of nodding his head to questions and just needs a little break. And he seems to have a hard time focusing his eyes on you some times... And he gritts his teeth, and sometimes it almost looks like he is trying to smile, but can't quite get the hang of it, and because he can't talk we arnt sure what to think about his mental state just yet. He got to sit in a chair yesterday, and that wore him out, he has lost allot of muscle tone through this and is having issues getting his limbs back to moving, but is finally getting the hang of his arms and hands/fingers... He keeps flipping the nurses birds (deffinetly put of character for him, but everyone just laughs it off) however, I guess when your upset and can't speak there is only so much you can do to show how your feeling.

Thank you again for replying, I'm praying Matthew makes a full recovery as well. I miss him

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Hi. I am sorry that I just now saw this. I hope Matthew is doing much better. You both need to remember, though, that even when his health is back to normal, it will take a lot longer for everything else to be normal. After so much time in bed, there is no muscle tone left ( it’s amazing how quickly it is lost) , and it takes a very long time, and a lot of hard work in physical therapy to be able to do even basic physical things normally.

I’m glad you found this site, and hope that it helps. I knew nothing about it when I came home, and no one prepared me for the recovery time other than telling me that it would take three or four days recovery for every day in the hospital. Once I got home I kept thinking that I could start working on my computer, only to find that being on the phone for a half hour was enough to wipe me out. It was unbelievably frustrating, but I was so happy to be alive that I was able to handle it.

It was a very toughperiod of time, and tough to find the right balance between resting and walking around to help strengthen my legs and improve my stamina. But I somehow found it.

He is lucky to have you by his side.

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I am so sorry for what you’re going through. I was with my fiancé when he was waking up and it was very hard to see this too. Someone once said the drugs make you feel like your falling every time you start to doze off. He didn’t sleep for days after waking up. Stay patient. For him it passed in 3-4 days and then he was really depressed and emotional. Reminding him that he was on heavy drugs and it’s ok to be sad helped him get through it. Stories will help fill in the blanks in time, I’d suggest keeping a journal of little things so you don’t forget and you can bring them up at later points “ remember when we walked down the hall and you said...” these were very helpful to him after he was out of the hospital and had regained his abilities.

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I was mechanically ventilated for 4 weeks and put into an induced coma. When they woke me up I had a tracheotomy. Communication is difficult, they put a valve in so I could speak at visiting times but they took it out after that. The nurses gave me a pen and paper pad to write on but I could lift my arms to write anything. Not being able to communicate is soul destroying especially if you can’t scream when you are in pain. There is research into how to improve the quality of care for those in ICU who have tracheotomies by using special apps on tablets for communication. All the best.

Edward

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Hi my name is Buzz. I fell 25 feet and landed on my back on a stair rail. I shattered my wrist, broke my back, broke 8 ribs, broke my knee, my sternam, my foot, my shoulder, my pelvis, I guess in all I broke 18 bones. I had several surgeries but they could not stabilize me for the broken back surgery. I developed ARDS, staff infection, renal failure, phenomena, icu psychosis, and pretty much all my vital organs were shutting down. I was given 24 hours to live. What happened during that and after was a miracle. There were people in the ICU that I heard around me that died. I went back in time and in the future.

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