Dad not waking up from induced coma after Sudden ... - ICUsteps

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Dad not waking up from induced coma after Sudden Cardiac Arrest, What are his chances? Signs of 'waking up'?

BimJeam profile image
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My Dad is 54 years old and collapsed at work last Friday 03/03/2023 from Sudden Cardiac Arrest. No symptoms, no chest pains, no warning signs. He is moderately fit, not a heavy drinker but is a heavy smoker and they found a blocked valve that had built up for months allegedly due to the smoking.

His heart just stopped and he fell to the floor, but luckily a colleague was there to give immediate hands-on CPR for approx. 10 minutes before paramedics arrived and got his heart going again with use of an AED which took a further 15 minutes.

He was taken to hospital and put under an induced coma and was kept intubated with therapeutic hypothermia for 72 hours in ICU. They took him off Propofol sedation Monday 06/03/2023 but found he was coughing a lot and his blood pressure was going up so they sedated him again.

They've kept him off Propofol but are using Fentanyl, Remi 100 and Clonidine to wean him off these heavy drugs and also balance his 'low' sedation they call it.

At the start, his GCS was 3 but gone up to 5-6 as he wasn't opening his eyes or responding in anyway. But over the past few days he's began to open his eyes fully and blinks, moving his eyes around slowly but staring off into space and not responding to commands.

He responds to stimulus and sometimes pain and he is breathing on his own enough for the doctors to consider taking him off the ventilator and giving him an oxygen mask instead.

The doctors are very pessimistic and concerned about possible irreversible brain damage and because of his poor heart condition and the time it took for resuscitation they've already warranted a DNR.

He has had both an EEG and a CT Scan that haven't shown the doctors a whole lot apparently, I'm waiting for our next sit down so I can get them to elaborate further as I wasn't there for the results my mum and auntie got.

Myself and my mum are persistent that the heavy drugs in his system are delaying his 'waking up' since he has always been sensitive to painkillers and opioids. A while back he once had 500mg of Co-codamol for a toothache and it knocked him out for 12-14 hours.

I'm very close to my Dad, I live at home with him and my Mum still and we both love motorcycles. He was at his new job doing motorcycle recovery for a week when this happened and we've never imagined a life without him until he becomes much older. It's too soon...

I just want to know if anyone out there has a similar story, what they did and what signs are 'good signs' that he'll eventually come around?

Thanks for reading. God bless.

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BimJeam
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FamilyHistorian profile image
FamilyHistorian

I’m not a medical person but was put in a coma before having open heart surgery. I was in the coma for just 2 months because I wouldn’t come round.

I’m not keen on comparing drugs or play the number game because we are all different but my gcs dropped to 1 twice I.e. dead. The medical teams tend to be pessimistic rather than optimistic. I think they just don’t want to raise hopes.

It is important at this time that you look after yourself . When you dad comes home he will probably be very weak and will need all the support and help that you can give

Grant_za profile image
Grant_za

FamilyHistorian has summed up things pretty well. There are countless posts here related to loved ones "taking too long" to come out of a coma. We are all different - even down to our individual chemical compositions. Some take longer than others, some awake from a coma quicker than anticipated - our bodies decide. As for the doctors being "pessimistic" - it's very common in critical care environments, overly cautious may be a slightly better descriptor.

I work in a cardiac environment. We have a colleague who has attained the nickname "Dr Death". He prepares family for the very worst. Somewhat ironically, he is also recognised as the one doctor in the hospital - if anyone can - is the one who could bring a patient back from death. You mentioned your father's sensitivity to medication - I assume you have discussed this with his medical team. Very often there is an underlying cause (usually unknown to patients), that is behind your dad's reaction to mild analgesics..As mentioned by FamilyHistorian, its critical you look after your own health in order to lend strength to your loved ones.

Sepsur profile image
Sepsur

As you mentioned, everyone has a different tolerance to sedation, I took eleven days to come around off a 57 day coma. They took me for scans because they feared a hypoxic brain injury - if I have one - it hasn’t stopped me doing all the normal things a recovering ICU patient does. It’s a long haul recovery full of progress and reversals of fortune.

This link takes you to a guide to intensive care, it’s really informative 😊

cc-sn.org/information

garycom profile image
garycom

Similar thing happened to me. I was in a medically induced coma for two months after a series of heart attacks, a cardiac arrest and then general organ failure. They thought I might have brain damage because I was "dead" for about 3 minutes. That was in 2013. I'm still here. Don't give up hope. Talk to your dad as much as possible even if you think he can't hear you. It's very difficult to diagnose brain problems. Ignore the scans. He can survive.

garycom profile image
garycom in reply togarycom

Also, request that the DNR be taken off immediately. Talk to him about motorcycles. Ask him to move a finger.

Copse77 profile image
Copse77

I also would ask for DNR to be removed. Your dad is young 54 years old. Everyone is different in their response to sedation. Keep talking to your Dad let him know you are there. A female critical care Dr wrote about her experience of being a patient. It’s called in shock Dr Rana Awdish- how nearly dying made me a better intensive care doctor.

I went through this with my younger brother 5 years ago now when he was in his 40s with two young children. It was the most difficult time. The kind consultant said remain hopeful and I always pass that advice onto others. I hope your Dad improves. My brother took 4 weeks to wake from induced coma.

BimJeam profile image
BimJeam

Thank you all for responding,

We had another sit down with the doctors yesterday and we were told he won't survive and should look into the next step of palliative care.

His kidneys and liver are failing him and they don't see any benefit in giving him an MRI or provide further treatment.

They told us his brain injury is too extensive and he'll probably only last a few more days.

His eyes still open but don't track movements, we continuously ask him to blink or move a finger or toe but no response.

The doctor explained how patients should react to pain/pressure like how an arm would come up to push your hand away but if they lock and extend straight down the sides that's a bad sign, but he's not reacting in anyway.

His sedation was taken off completely along with all the other medication and the only thing they have him on is painkillers to keep him 'comfy'. But still no clear improvements after a week.

We don't want to lose hope, but we also don't want him to be a vegetable for the rest of his life. I know in my heart he wouldn't want that, as we've all had that talk before as you do.

I know it's easy to say the doctors are this and that, but my Dad is an ex Welsh Guard and served in Northern Ireland in the early 90s, the Hospital is partly military as it's located right next door to the barracks he did his time at. So the consultants/doctors we deal with are soldiers themselves and we really feel the sense of comradery they have with him so I'm not bashing the doctor's decisions too much but I think it's good to question them sometimes.

Time will only tell this week how he gets on.

Thanks again for reading this story and for all the positivity, I'll try to keep it updated as we go along this week.

Sepsur profile image
Sepsur in reply toBimJeam

💙

Ashfilm profile image
Ashfilm in reply toBimJeam

I'm really sorry to hear this about your dad. I have recently gone through a similar situation with a relative. My mother was under heavy sedation in ICU for a few days . Unfortunly about a week ago the doctors took us in to a room to tell us the bad news that our relative was medically too far gone to make a recovery . I understand the news is very hard to hear and when a relative is seriously ill it feels like a rollercoaster of ups and downs. in our case we had an option at first of prolonging treatment longer but once the doctor explained that it would only cause more pain and would not make a difference , we made the hard decision to let the doctors make them comfortable and they passed away peacefully last week . I know its is a very hard decision to make but in our case i know that our relative would not have wanted to go on any longer in pain, At the end of the day i think you need to think about what is the best thing for your relative .

BimJeam profile image
BimJeam in reply toAshfilm

Thank you for replying,

Sadly, we too had to make that hard decision following my Dad's sudden deterioration on Tuesday night. They called us in immediately at 11pm and told us he isn't going to survive the night as his body had enough and was giving up.

They gave him plenty of painkillers and sedation and turned the ventilator up to 100 to keep him comfortable.

After an hour and a half it was clear he wasn't coming back so the doctor suggested to remove the ventilator and allow him to breathe on his own for his last moments to make it more natural, comfortable and in a way to keep his dignity.

We were all around him, comforting him and after about another hour of him still fighting, he eventually took his last breath and died.

That was the hardest thing I've ever witnessed, but I can take comfort in knowing he went on his own terms with all the family around him.

It's so hard for us all to process everything that's happened, and we all feel so numb but we all agreed being a vegetable, minimally conscious or severely brain damaged was something he definitely wouldn't of wanted.

He was a great artist, very creative, loved music and motorbikes. He always worked with his hands and kept active. Not being able to do anything on his own or lose parts of his memory would've made him completely miserable if there was any chance of him surviving.

With his body rapidly giving up, in a way he decided it was time to go.

Ashfilm profile image
Ashfilm in reply toBimJeam

I'm really sorry to hear about your dad. I know it is very difficult thing to hear from the doctors but be assured the doctors will have everything they can treatment wise before coming to the final conclusion. in terms of offering advice all I can say is that go easy on yourself and take each day as it comes. At first you will feel numb and maybe angry at what has happened to your relative . I found spending time as a family definitely helps and thinking of the happy memories you have of the person. I wish you and your family all the best.

Axogirl49 profile image
Axogirl49 in reply toBimJeam

I’m so very sorry for your loss. I used to post on here back in 2020 when my mom was in Covid ICU. I still get email alerts even though im never on here anymore. Your story resonated with me as my mom couldn’t seem to wake up either after being put under sedation to go on the ventilator. It was the worst time of my life and I was hoping for a better outcome for you. My mom died without us there due to Covid restrictions. Having lost both my parents now, I can say it is far better to be able to be there than not. You did a great and comforting thing for him by being with him in his last moments. Be gentle with yourself and get rest when you can. Stay strong. I firmly believe that we will all see our loved ones again when it’s our turn to go. ❤️

BimJeam profile image
BimJeam in reply toAxogirl49

Thanks for taking the time for your kind words and reading my story, I'm very sorry for your loss too. It's in a way somewhat comforting talking to others who have gone through similar or the same trauma and it steers me away from that all too familiar 'loneliness'.

I still have my mum and my younger 22-year-old sister to look after since we all live in the same house still so I'm staying as strong as I can for them.

It's just so hard to believe that it's happened now and so suddenly. I always thought maybe another 10-20 years then we'd be ready, with plenty of time to plan, prepare and properly say our goodbyes. But like this with no warning signs or symptoms, our family feels kind of 'robbed.'

He grew up with a hard life but stayed and made sure we didn't grow up with the same hardships he faced. I feel truly blessed to have had him as a father and we'll always keep him alive inside our hearts. That's what will give me the strength to carry on.

Axogirl49 profile image
Axogirl49 in reply toBimJeam

Your Dad sounds amazing! Yes you were definitely robbed. I’m glad you are so close with your family. Together you will get through this, one day at a time. After my dad died I believed I would’ve had many years with my mom. Because every one I knew who had lost one parent, their other parent was still with them many years later. Unfortunately a tragic and untimely set of events led my mom into a rehab center in March of 2020, which as we now know was the worst place to be in the pandemic. Ultimately catching Covid and she died only ten months after my dad. They were 74 and 72, we should’ve had much more time together. I totally understand the feeling of being robbed and I really sympathize with you there. I found that there is definitely comfort in talking with others who have gone through this terrible loss. I did a lot of grief counseling. I am in a better place than I was in 2020. I found some poems and stuff that were helpful to me, Will post those later if I can find them! Let yourself have some good cries! He sounds like a great Dad! Carry the best parts of him moving forward and he will live on in you forever ❤️

Grant_za profile image
Grant_za in reply toBimJeam

I'm so sorry to hear about your dad. I cannot imagine how difficult it must be to have to make that decision to "let a loved one go".We all say given a terrible prognosis and near zero quality of life should we survive some medical crisis, we would prefer not to be "forced to survive", but that dynamic changes radically when this applies to a loved one and we are left to make a decision on their life / survival. I guess it comes to human instinct - we would hate to be a burden on others, yet simultaneously are beyond happy to carry the burden for a loved one, for no matter how long it may be.

So this is going to be a rather long post, which I hope may be of some benefit & comfort to yourself, and any others who down the line may be faced with the same challenges. I have attached 2 photos - related in context to this post, and your own recent experience.

The 1st is of a lady in ICU - the 2nd, a rather banal photograph of a hospital reception area.

ICU

This is a seemingly odd photo, taken quite by accident, but I have kept it as a personal reminder as to the pain some families have to endure. The photo shows a lady in ICU on mechanical ventilation. It was taken from inside my mother's "cubicle" alongside this lady. The hospital is a private facility and is fairly flexible in terms of ICU visits, especially to patients inside isolation cubicles. I was visiting my mother one day and this lady was rushed in from the emergency dept. She had collapsed in the ER, but the staff managed to resuscitate her. She was brought up and placed on ventilation. For the next couple of days her husband and I would see each other thru the glass panelling - however in both our cases we had to wear gowns, masks, gloves, hair coverings etc when visiting. In reality we really just saw each other's eyes. My mother was fully conscious and lucid, about to be transferred to a general ward. This lady was in an induced coma. I would see her husband visiting, on each occasion reading letters and parts of the Quran. One evening around 9pm we were both visiting. He left his wife, and shortly thereafter nurses came in to attend to my mother, so I figured I would go downstairs and have a cigarette while the nurses completed their tasks.

When getting downstairs I recognised him but he was surrounded by many ppl - friends and family, very sombre - clearly something was up. I finished my cigarette and went back in. While waiting for the elevator, he arrived. I took the opportunity to introduce myself as the "neighbor". He too recognised me. While alone in the elevator I mentioned I had seeing him coming and going - but tonight was a whole different thing going on, and asked him how he was coping. He told me things were bad, could not be worse. The medical team had informed him his wife was extensive brain damage and organ failure, and should she survive, she would require secondary life support in hospital for the remainder of life. His family in consulatation with the medical team had agreed to end mechanical life support at 7pm the following evening. The following day my mother had been transferred out of ICU to a general ward. I visited her early that evening and was driving home. This was January 2017 - summertime in Cape Town. I have an apartment on the beach and was nearing home. It was a blissful warm summer evening, while driving I was looking at the ppl jogging and walking their dogs. There were a few yachts in the sea close to shore.

Life could not be better.

The music on the radio stopped - time for the 7pm news.

At that moment it struck me - while I was enjoying a blissful drive home, at the hospital the young lady's life was about to be brought to an end. I'm generally fairly "clinical", seldom showing emotion, to the extent some friends nicknamed me "the ice maiden".

Despite this, the emotion at the time was overwhelming - this would be the end for this young couple (mid 20s).

I burst into tears, barely able to navigate my way thru the traffic - overwhelmed by both sorrow and anger.

I kept the photo as a reminder as to how fragile we are, and how quickly life as we knew it, can change.

You have recently been through the same hell, I wish you the very best in your own recovery from this very very sad experience you have had to endure.

Hospital reception :

This photo was taken on Christmas eve 2019, around 5.15pm.

My mother had been readmitted to the same ER as the above story.

I went with to the hospital in the ambulance. The ER team told me they were about to commence treatment and surgery. I told my mother I would go to her home and collect the usual things she wanted while in hospital. I told her I would be back in about 2hrs (after surgery). I was sitting in the hospital reception area waiting for Uber to collect me to take me home. While waiting I took the photo of a seemingly abandoned hospital reception on Christmas eve - sent it to my cousin with the caption "guess where I am again" ( During the prior 3 yrs my mother had gone thru multiple admissions and surgical procedures).

Uber arrived and we left for home.

About 5 minutes after leaving I got a call from the ER, asking me to return ASAP, as my mother had "taken a turn for the worse".

We turned back and I got to the hospital. I immediately went to the cubicle in which we was being assessed. However, the cubicle was empty. The ER doctor saw me and came rushing over. I asked him where my mother was. He told me she was in the resuscitation room - "but didnt make it".

I was taken into the resuscitation room where her lifeless body lay.

I was told she went into cardiac arrest around 5.10pm, and was pronounced dead at 5.15pm - the very time of the photo.

I have long wrestled with my thoughts - had I have stayed with her for another 10minutes, she would not have died alone.

Simultaneously, had I have been there I would have been there, I would have witnessed her going into cardiac arrest and resultant death.

In your instance, you witnessed a peaceful transition if you father, surrounded by lived ones. In my instance, that transition would have been extremely traumatic.

Having said that, in terms of being with my mother at the moment of her death, given it was sudden cardiac arrest, I'm very doubtful she would have even been much aware of my presence at the time - and if so - possibly traumatic for her to see my own fear at the time.

Take care & keep strong.

Hospital reception
SJKK profile image
SJKK

I'm really sorry to hear about your Dad. I was placed into a medically induced coma following a critical illness - and I'm also sensitive/take a long time to metabolize analgesics. It took me a full 5 weeks to 'wake up' from the coma. The medical team also gave my husband a very guarded prognosis - 'we'll try to wake her up so you can say goodbye' and 'if she does wake up she'll probably be neurologically damaged'. My kidneys also failed. But I'm still here! And no neurological issues. Definitely talk to your Dad about things he loves - my coma felt like a weird dream induced state but I remember hearing my son talk about his day at school. I never responded to the medical teams requests to move my hands, open my eyes etc. but my head snapped right round when my husband played a recording of our cat meowing!

Copse77 profile image
Copse77

I am so sorry you lost your Dad. Thinking of you and your family.

CALMsMamPa profile image
CALMsMamPa

my mother was opening her eyes, following our finger with her eyes, blinking on request, looking left, right, up down at our request and keeping her eyes closed when we asked her to to a count of ten etc. still ICU persisted that she will never wake up functioning and that these eye movements were involuntary, they did not observe her and only agreed to look at a video of her doing this after hospital lawyers and the ceo became involved when I made a video of mum opening her eyes and sent it to a very close family member, the hospital telling me if i didn’t delete it their lawyers would be involved and forcing me off ICU. (I was legally allowed to record my mother which their lawyers confirmed the next day) because they insisted she could not function at all after her cardiac arrest and subsequent hypoxia, and that her family were simply prolonged ‘undignified life’ and ‘suffering’…

Then a few days later after they stopped her sedation, she was moving her eyes on command and her little finger on her left hand only, which was what we were instructing her to do.

Sadly this is now with the coroner’s court, because ICU refused to speak to my mother to ascertain her wishes, instead sedating her whenever she roused or was trying to communicate (they said it was seizures but refused to observe her other than from one of my videos after their lawyers got involved), she was religious and wanted to be resuscitated, but the hospital refused throughout, saying it’s their legal right to deny her treatment and allow her a dignified death if they felt she was never going to wake up/have reasonable functioning… regardless of how sedated she was!

The hospital asked for my blessing to take my mother off treatment, which I refused to give as they’ll decide when they want the bed back and if they think there’s no hope for the patient regardless of whether there actually could be.

She was in hospital for ten days but it would have been two days had we not raised our concerns about her religious wishes and her wish to donate her organs, which was disregarded, her organs were not saved, no one but the hospital wins from this, when other lives could have been saved…

I don’t know what the situation is for your dad, but we insisted they took mum off sedation, and reduced all other sleep inducing medications to allow her to wake up/and begin to move in her own time.

It took days of disputes and discussions and whenever they did reduce medication, she began to wake up, then she’d get distressed from the extreme build up of fluid in her mouth and wind pipe around the ventilator tube, causing her to cry, stare at the nurses in desperation as she choked over and over again (they didn’t give her medication to control this until the evening before her death), then they’ve sedate her all over again. The hospital kept saying she was only being incubated to keep her comfortable, as she did not need the oxygen to survive per se!

She didn’t know how to communicate with us, with the ventilation tube in place, she was extremely drowsy but fighting through it as best she could, trying to raise her head, and move, but too tired from the meds. It was like a horror movie.

I began to worry she had locked in syndrome and read a book to her about it, pleading with her that if she did not want to live for a few weeks/months only able to open her eyes, move her head/finger, that she must keep her eyes closed. But she would defiantly open them wider. I feel like I’ve allowed this hospital through my lack of legal knowledge and legal rights to fight for her right to live, to put my mother to sleep like a mangy unwanted dog. It was harrowing for family and even nurses treating her because her eyes were so desperately pleading with them.

Ask for your dad’s medical chart to see what sedative medication he’s on, look at ways to reduce medication to see if he will wake up, get a second opinion and if there’s still no wakefulness it might be time to hold him until he slips away.

However if he does wake up and is responding to your voices, to stimuli, and demonstrates movement etc on command that cannot be seizures, you will need to decide if locked in syndrome is something he can accept as a short term situation until his death, because I’m guessing once they do wake up and the hospital acknowledges them communicating, then the hospital cannot medicate them to death, idk but either option is awful.

Good luck

Lux95 profile image
Lux95 in reply toCALMsMamPa

I am so, so sorry about your mother, and all you are enduring now. I don't believe minimal interaction while waking up necessarily means a person will never fully wakeup. I can't guess whether the hospital's prognosis was right or wrong, but it scares me to think hospitals might declare a patient "beyond hope" too quickly.

I have to wonder if there really is anyway a hospital can be sure a person won't recover if they never fully remove sedation and find out.

It took me several days to wake up from sedation, and during that time, I couldn't communicate enough for anyone to understand me. Everything looked distorted, and coming out of my two-week long "nightmare reality" while under sedation, I had no idea what was real and what wasn't. People who leaned down to try and hear me whisper looked huge and I felt like they would smother me, so I pushed them away. I could only lay there and hope for the best while drifting in and out.

I was on a trach at that point which is easier to adapt to. I can't imagine waking up with a vent tube down my throat - I would have choked and gagged to death most likely (I still have a persistent cough, sensitive throat and lungs, probably due to the vent).

Because of the trach, I couldn't talk for over a week after fully waking up, and due to severe muscle/strength loss, couldn't move and control my hands enough to write or point to anything. My eyesight was temporarily seriously affected as well, making communicating even more difficult.

Sedation has a profound and often permanent impact on us physically, psychologically and emotionally. To me, waking up from sedation seemed pretty similar to coming back from the brink of death. We are literally starting over from near zero.

It seems many hospitals, physicians and nurses do not really understand what it is like, and how little there is to make a determination on our long-term health while waking from sedation. If hospitals expect more than eye movement, God help us. Just opening our eyes for a few minutes a day may be all there is to go on. That's all I remember at least. Days of that, apparently, then I was awake.

My wife has vowed not to allow me to be sedated again, should anything like this re-occur, God forbid. Now I wonder if she hasn't told me everything, because I think I fared pretty well all things considered.

pls see my story . My husband did wake up after 9 months of being in a coma . He had such bad brain damage less than 10% was left undamaged . He was out 40 mins no oxygen to brain . Cardiac arrest etc .

When he woke it took time but his brain function understanding etc was all there . With few memory issues and most damage was his body. Organs etc and physical severity disability.

So don’t give up hope your dad has a better chance of recovery than my husband. Just takes ages to wake up respond . Do all the 5 sensory physio therapy now so u can get him up faster . Touch smell taste ( tip of tongue with powdered flavours, I used strawberry milkshake, chocolate garlic powder pizza herbs strong flavours etc and a drop of lemon juice or coffee drop with pippette , be careful no liquid that can aspirate him ) This helped him awake his senses and respond via grimacing or frown ( he didn’t like garlic) Anyway lots of ways to get responses I played phone sounds ringing, ducks quacking in park traffic noise rain thunder sounds . His day to day familiar sounds . He used to move his arm up to answer phone whilst he was in a coma so I new he was ‘ still there ‘. Drs will need convincing just record evidence of movement or response as the drs will insist it’s ‘ not real or you hoping too much ‘

Good luck

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