ICUsteps
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Mum in ICU, not waking up from sedation, induced coma. Not fully conscious been 2 weeks now anyone experience this before with loved one?

Had meeting yesterday to discuss next steps but they already been talking about getting her off a ventilator. She has been in the ICU 5 week’s which 3 of those weeks she was sedated everyday as she had some seizures. Like anyone would take awhile when they have been sedated that much.

They stopped sedated her for about two weeks now and say they are just waiting for her to wake up. My mum takes breaths of her own, at times she opens her eyes, yawns, moves lips. They saying may be doing these things but is not aware of it.

They say she has some brain damage but Im 100 % sure she can hear us she opens her eyes when she we are speaking. Not all the time but it happens.

Doctors think she is not improving because she hasn’t shown any meaningful movements at all. Such as not responding to verbal commands, no movement of limbs or being uncomfortable with the tube in her mouth and trying to take it out. She only responds to pain stimuli.

They had given her another week but she may die. I have some faith cuz another paitent is going through same thing and last minute showed improvement and their family was told same thing but he has showed slight some improvements, my Mum hasn’t.

I’m mentally preparing myself but my younger sister is taken it so hard.

Has anyone experience a loved one taking this long to wake up? It’s sad cuz she been in and out of hopsitsl her whole life and has always come out alive and well.

Let me know your thoughts.

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This link may answer some of your questions

intensivecarehotline.com/qu...

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Yeah I’ve read this before. Which has helped me understand but

Just want to know any personal experiences.

Anyway, thank you for replying.

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I had seizure because of some of the anti-viral drugs I was on. I was in a coma for 8 wks. I would open my eyes if my brothers, daughters or wife came in and I heard their voice. It took me 11 further days to wake up properly. The effects of the sedative drugs took weeks to leave my system. I had CT scans & MRI scan to see if I had damage to brain due to oxygen levels being critically low at times.

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Glad you are ok, 8 weeks is a damn long time. that’s really interesting to me. May I ask did the scans say you had possible brain damage?

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They were scared that if I did eventually wake up I would have brain damage. My heart, kidneys and respiratory system had failed due to sepsis & severe ARDS.

Thankfully, although my memory is screwed and my cognitive process is altered, I lead a normal life

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Do not give up! I was in a coma for a month and on ventilator for about two months. From what you have described I think your mother is aware of you. After I woke up I was told I wasn’t aware of anyone but I remember wishing my sister was there and I remember seeing her for a short period. Later after I woke up I was reading old emails of a friend and he had said I had opened my eyes and seen my sister and a tear came out of my eye. I remembered that even tho I was in coma. Do not give up and make sure you tell the doctors and nurses you want them to make every effort to keep her alive. Make sure they have not written “do not resusitate” on her medical file. They thought I might have brain damage as well. My prognosis was “not good.” That was almost five years ago and here I am. Do not give up. My best wishes, gary.

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Thank you so much, you given more more faith. I will not give up but once again, doctors want to call another meeting in the next two days.

They want to take her off the ventilator. Saying the longer she is in it the most problems it could cause. It’s officially been a month and 2 weeks that mum had been in ICU and about 3 weeks of waiting for her to wake up.

She still not moving hands or legs but only movements as described above such as the same eyes opening, yawning, slight head movements.

Did they take you off the ventilation before you woke up from your coma? Im scared if they take her off the ventilator my Mum will die, she’s only 41. Will definitely tell them to make every effort they can to keep her alive.

Right now I’m doing as much as I can, playing music for her, speaking to her.

Thank you Gary for you comment and replying to me!

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I'm not sure but I think they took me off the ventilator after I woke up because I was told I was in a coma for a month but on the ventilator for two months but I would have to check that. I was 56. If she's 41 that is a big point in her favour. I had a multitude of health problems - including sepsis, pneumonia, cardiogenic shock (all my organs were failing) and quite a few other ones. When you talk to her, tell her it's not her time to go yet and that you will be there when she wakes up. If she has friends who are able to visit, let them visit and talk to her as well. If she knows there are people out there for her it might encourage her to survive. They are probably trying hard to save her because she is still young, but if you don't want them to remove the ventilator, don't give them permission. Things can change quite quickly. If you want them to wait, then they have to wait. Don't feel pressured to make a decision you don't want to make. Talk to a friendly nurse and ask her what she or he thinks. I will be thinking a lot about your mother in the next couple of days. Don't give up. Keep us posted. All the best wishes, g.

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Don’t give up keep talking to her , she will slowly come around when someone is fully concious they would automatically pull at the tubes etc as it’s uncomfortable it give her time the sedative drugs they use are so so strong my brother spent 8 days in a coma he woke up on day 9 and cried it’s 7 month down the line now and it’s no. Where near over but I heard his voice for first time in 6 month last month , keep your faith and keep talking to her I pray she’s better soon

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Will do, we are all praying here. Thanks for keeping her in your thoughts.

I think I just needed to hear stories like this to keep me going.

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What ever you do don’t agree with the doctors to take the ventilator off and what ever you do don’t you dare sign the end of life plan coz it’s like your killing your own mother by doing either!

Don’t forget one thing that’s your mother your life your future your world that one mother that’s carried you all the way teached to feed you walk you n carried you 9 months in her stomach!

And don’t forget one thing for the doctors it’s just another patient another number they not asked they gona play sweet with you they all together don’t show weaknesses they will first inspire you to take everything off and take control of your emotions but don’t give in them meetings are like worser than someone murdering you trust me I know how it is but honest truth regardless depends how much you love the person and how much you willing to fight like with our dad they threatened to take us court coz he was in a position like your mother but we said do it but eventually he woke up after few months know in his senses and in Salford Walking n trying to speak because we fought for him know his learning things so fast !

But like I said depends how much you love her and how much you willing to fight for her coz in this situation your backs gona be against the wall till she gets there keep fighting x

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I appreciate this comment so much. I completely agree with what you are saying. Thank you!

Will keep everyone posted.

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Im sorry you are going through this stressful time . My mum took 7 weeks to wake up and we were told she wasnt going to make it .its taken a long time but she is now home and totally independent . Keep talking to her , play music, stroke her . Really important look after yourself too - take time out to eat and rest .

Sending love and light x

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My Mum has made improvement in my eyes. On Thursday 1st she responded to me, my sister and aunt when we asked if she could hear us. She nodded her head. That's first time she ever did that. She doesnt respond every time you ask her something but she does occasionally by nodding her head. So at least that's more of a confirmation that she is aware of us.

She still hasnt made any movements with her limbs - arms or legs but its been roughly 5 weeks, if your Mum woke up then i can still have faith. I mean she finally responded to us, that's good sign! When i visit i stroke her hair, play music and talk to her.

Now im just scared of what doctors we say at our upcoming meeting cuz so far the last two meetings has been the same 'no improvements, she not aware of tube in her mouth, we need to think about taking her off ventilator, she may not survive'

Anyway, happy to hear your Mum is doing great and I hope it continues that way.

Thank you for your message xx

I will keep everyone posted as much as i can.

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I was mechanically ventilated for nearly 4 weeks. When you’re in an induced coma you are generally oblivious to what’s going on. They use very powerful anaesthetics like Propofol Intravenously and painkillers after being intubated. Don’t lose hope due to the long time on life support. They do try and wean you off the ventilator to see if you don’t need it but they will re-intubate you if you cannot breathe unaided. This happened to me many times according to the nurses. Waking up from a long coma is very disorientating and you can be delirious for days so don’t think that’s permanent. Recovery from long comas is complicated and takes time to adjust. Wishing you well and take care, all the best.

Edward

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Unfortunately they will be removing the ventilator from my Mum today. It's quite clear that no matter how much they know we don't want it to be removed and no matter how many meeting we have the doctors have mind up their minds a long time ago. it's still gonna happen at some point anyway. I can only hope that my mum continues to breath on her own once they take it out because at the moment the machine is only supportung her breathing nothing else.

The consultants here at Kings College are really horrible to talk to. Spoke on lady to. Phone and she made out that I'm making this about myself when all I'm doing to fighting for me mum. I want to know that I done everything I can. I asked to get written reports and any test results and they say we given u all the information during our meetings. The meetings are the reports. It's so frustrating.

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Hi, I would just like to inform everyone that my mum passed away a week ago.

Please PLEASE do as much as you can to keep your love one on the ventilator or whatever type of life support they may be on - especially if you believe they would survive if they kept longer.

Also make sure you get a written report! By that I mean ask the ward/consultant for a written medical report on their findings regarding your loved one.

I ended having to record everything myself on paper cuz they wouldn’t give us the scans and report we asked for. They said they would but never happened, so asked again and they gave us some poor excuse saying they ‘verbal meeting we had in the offices were the reports’. The meetings we always had with then were very vague. They have since avoided giving us one so I now have to go legal measures.l because we are in fact entitled to it.

My mum shouldn’t have died, nothing wrong with organs but as they said ‘possible brain damage’ but provided us no proof whatsoever. They said nothing they can do for her anymore so they removed her off support.

She breathed on her own for a week before she passed.

Can you believe the moment they remove the ventilator from her to the back of the ICU ward with patients who were the ones actually recovering and talking unlike she.

They then removed her from the ICU Ward the very next day and the consultant named Victoria had the nerve to tell us that ‘this is not because they dont care’. Wow thanks. She really made it sound like the new ward she would be moved to would still monitor and care for my mother but no we found out two days later she was on ‘end of life care’ and no one were doing observations anymore.

It’s been so hard. What they wrote on her cause of death on the medical death certificate is so far off that I’m even more angry. what they wrote there is not what we have beeb told in the ICU whatsoever. In fact that condition was never once mentioned.

All I can really say now is that my Mum is at peace and no longer suffering.

May her soul forever rest in peace. I love you Mum always.

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I'm so so sorry for you. It broke my heart to read. may her soul rest in peace forever.

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I'm really really sorry for your loss. My dad was in ICU for just over 2 weeks and was not responding to anything he had pnumoneia with multi organ failure. The hospital had our hopes up the whole 2 weeks that he was going to come home but on the last night they told us he wasn't doing very well and that he not had another issue which was there the whole time but they never seemed to mention it to us. Later on that night we were called in and had to say goodbye as they said they are going to turn off all his machine as there is not much more they can do. The worst part was he had never woken up and wasn't on sedation it was his liver failure keeping him asleep. However, I know he could hear us throughout the 2 weeks every time I made a joke to him he would raise his eyebrows and every time I told him I loved him he would pull this sad face and sometimes a tear would come out. I know he could hear us and for anyone in the same position just please always always talk to them as they will be able to hear at the moment in time whether or not they will remember it the next day they will hear it in that moment in time. My dad was only 60 years old and was taken too early from me and my family. Anyone who is suffering with a failed liver or liver cirrhosis please look after yourself. My dad only found out a week before going into hospital that he had this disease and stopped drinking then but it was too late for his liver to cure to help him get better.

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