Day 7 in ICU with multiple organ failure

My mum was put in a coma last Sunday as she went in to Acute Liver failure. She was admitted to hospital 2 days earlier with Breathing problems. My Mums Kidneys have been struggling for years and she also has liver disease. Pancreas issues and COPD. They had her on a ventilator and Dialysis to start as her Acidosis was high. Day 4, they had her breathing for herself but this caused her BP to go sky high. They combatted this with meds so that night they decided to take her off Dialysis. Yesterday her breathing was struggling so she had to go back on ventilator. Acid levels have jumped but not excessively. They are giving her meds and saying that the kidneys are functioning but not as well as they would like but are seeing how they go for now. Her liver is now working in a reduced capacity. I am extremely worried about how long they can keep her on these machines as she is tiny (6 stone) I know ICU has impact on muscle mass and she hasn't got that to begin with. I love my Mum and dont want her to die but she had limited mobility before this. I don't want her to survive just to be even more miserable than she was before. She has an array of other health issues on top of her already poor organs. She is also depressed as we lost my Dad last year to a heart attack.

13 Replies

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  • Oh goodness - she really has been through the mill :( And you if you only lost your dad last year. My dad has now been in ICU for just over 4 weeks and even though they feed him through the tubes he seems to be getting thinner by the day. I guess the longer they are in bed the more muscle will just vanish off them. You must ask the doctors all these questions and hope they give you some honest answers. Good luck - and keep us posted x

  • Hi. Sorry to hear about your Dad. 4 weeks!! Has he been in a coma all that time? Your post has actually helped my anxiety as I thought 8 days was pushing it. My mum was due to have a Tracheostomy today but there wasn't enough consultants available but also, her heart rate is still causing issues. Try again tomorrow. If it goes ahead tomorrow, they will look at waking her Wednesday evening. That will be 10 days in a coma still on a ventilator. On the bright side, her kidney function has improved with meds. Still not ideal but doing the job albeit slowly. Staying away from putting her back on Dialysis for now.

  • Hi Shelley

    sorry to hear about your mum - my dad was on dialysis for the first couple of weeks before his kidney function returned to normal. He has been in a coma for the whole time although after two weeks he was opening his eyes a lot and responding with nods of the head and squeezes of the hand. He unfortunately then had an emergency op and since then has been pretty unresponsive again - I am thinking that is why they have left it so long to do the tracheostomy - though talking to some of the other relatives at our hospital they all said their loved ones didn't get them until about 4 weeks. I am just hopeful that once he has it they can lessen the sedation a bit - I'm sure half his other issues are because he just lies there and can't move anything!! It will be nice to have him a bit more responsive. Reading other people's stories the length of comas seems to vary considerably - depending what put them there in the first place I guess. Wishing you and your mum all the best - keep us posted. I am finding this group so useful - to talk to people who actually understand what you are going through as even though friends are great unless they have been through it - it is such a different world to understand xxx Amanda xx

  • Hi Amanda. Been a surreal day today. Went in to speak to consultant. Its not a good outcome. Her breathing has worsened and the chances of her ever breathing on her own are virtually 0%. He said as her Liver, kidneys, Pancreas, lungs and now heart are in such poor condition, as well as her massive muscle loss (keep in mind she was barely mobile before) if she leaves the hospital, it would be to go in a nursing home (due to her needing such high level care) and probably permanently attached to a ventilator and regular Dialysis which wouldn't be fair on her. He is continuing with the 4 hr on vent and 4hr own breathing but with assistance however if her heart stops, they won't restart it. Her heart rate is hitting 150 when breathing herself with assistance. If her kidney function declines, they will stop support. If all stays the same after weekend and her breathing hasn't improved, they will be having a conversation with us about turning off ventilator. He does feel that her heart will give out first though. There is always a chance but an extremely slim one. Just want this to be over now xx

  • Oh Shelley :( so sorry to hear this. Your poor mum :( How are you? Are you happy with the DNR - that must be so hard to talk about. A nurse did ask me off the record what my thoughts were but I said if its down to me you keep trying - but don't know if that is me being selfish. You sound so brave. I guess if you have seen your mum suffering and know she would be depressed with this prognosis and the quality of life it will leave her with then you will know what the best thing to do is. My heart does go out to you - lets pray she can prove these doctors wrong xxx Think it is going to be a tough few days for you - remember I am here xxxx

  • Hi Amanda. Sorry for late reply. She is doing ok at the moment. Her heart is behaving itself now they have dosage of meds sorted. As of last night she is awake!! She can move her eyes and nod in response to questions and can wiggle her toes but that's it. Can't move hands as yet. She is doing well at triggering her own breath on the vent but the docs are saying that the big test will be trying to downgrade her off vent. This will be attempted next week. They just don't think her lungs will manage due to how poor they are. She had COPD before this. Am enjoying being able to communicate with her and making the most of each day. At least now, Mum can input her wishes. If she wants to fight, we'll support her, if she doesn't, we still support her. Has their been any improvement with your Dad yet? Xx

  • So glad there has been an improvement - and you are right it makes the world of difference being able to communicate. We are in a quite similar situation. Dad had his tracheostomy fitted last Wednesday and the next day was off sedation and ventilation. He had to go back on ventilation later on the Thursday but just for support (think he takes 10 breaths himself then ventilator does a couple for him). It is such a relief to have his eyes open and nods and shakes of the head. The latest thing is they are now concerned he may have had a stroke whilst sedated as he was not moving his right side at all. I think I have seen his right foot move though and to me his face looks ok (though mum thinks not!! - he just looks odd as he hasn't got his teeth in to me!!!). His right arm is extremely swollen so might just be too heavy to move. He had a ct scan on Friday which didn't show anything obvious but they are consulting with neuro team. I still feel like we have taken a big step in the right direction - just waiting for the two steps back which is what it always feels like!!!

    Fingers crossed they both keep improving xxx

  • Hi Amanda. Yes a very similar situation. Mums right arm is also swollen to the point fluid is seeping out of skin. Apart from a wiggle of toes on Sat, Mum can't move at all except a very slight nod of head. Her eyes are moving and she can lick lip's. It's like her bodies paralysed. She couldn't move toes yesterday either. She is drooling from right side of mouth as well. I said to my sister last night I wonder if she has had a stroke? Doctors haven't said anything though. Could just be

    2 weeks on vent and in coma has destroyed all the muscle. Bless her, she had no muscle when she went in. Shes only 6 stone xx

  • My dad had some bags on his arms before that collected all the fluid - if only we could all lose water retention that way!!!!! I keep thinking that obviously it must take a while for all the drugs to get out their system so not panicking too much yet and as you say they have lost all their muscle and strength - they need to find a way to build your mum up though :( xx

  • Just to let you know that Docs made decision to take Mum off vent today as her quality of life will be zero and she would be bed bound for life. They explained everything to Mum and asked her if she wanted them to take her off vent. She nodded. They confirmed with her several times. They called me to come in at 12 as they wanted me with her when taking Trach out. Trach out and off vent. She is just about managing to breath at mo (much to Docs surprise) but this is a let nature take its cause moment. The longer she breathes herself, the more tired she will get and the more her heart and kidneys are going to suffer. Any deterioration, they will just keep her comfortable. Xx

  • Oh Shelley I've only just seen this - I never got a notification :( I'm so sorry to hear this - how on earth are you? At least she made the decision for herself, you were right and she has had enough of suffering xxxx

  • Hi Amanda. No worries. Haven't got off the rollercoaster yet... She has carried on with her breathing and was moved to a ward on Thursday. It was awful to start as there were no monitors and one nurse for whole ward. Her drooling was so bad she was soaked and body still paralysed. We felt she had been abandoned there. We had a call on Sat morning to go in and see Docs as her vitals went off in the night. She has developed another infection and Sepsis was starting again. We thought this might happen as liver and kidneys were only working at 10%. They made the decision to stop all Meds, Fluids and food drip from Friday night so as not to prolong the inevitable. Rather bizarrely, after her episode, the paralysis lifted and she stopped drooling. She hasn't been able to communicate since with nods or lick lips though. She opens her eyes but looks through you. Amazingly she is still going. She has had severe agitation thrashing about. She is now dosed up to the 9's with morphine and Midazolam (Sedative). Iv stayed at Hosp with her since Tuesday morning. I'm exhausted so going home for a few hours shortly for a shower and lie down. It will be a week tomorrow night since she has had fluid. Shes only 4 stone now so only God knows how she's still here. Cant go on much longer surely. Keep thinking her words again "God must want me to suffer" Hows things going with your Dad now? Hope there has been improvement xx

  • Oh goodness, you don't imagine it will take so long when they make the decision to stop treating do you? Though it sounds like despite everything her body is really fighting!!!! I really feel for you having to go through all this - it must be horrendous :( And you must be so tired if you have been staying at the hospital - you need to look after yourself too bless you xx

    Dad is slowly improving, since being told there wasn't much more they could do for him and that they would be surprised if he lasted another week he seemed determined to prove them wrong. He manages a couple of hours a day in a wheelchair and a few times a day they put a mask over his trache and he breathes totally unaided. It's progress - he still has blood in his lungs and chest though which I'm guessing could still be infected although his temperature has finally started to come down. Its a long slow road........ I took my 9 year old son into visit him last week which I think he enjoyed - change of face to look at!!!!! x

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