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My mum is on ecmo system. (replacement lungs) I have questions about the sedation...

My mum has been taking Methotrexate for the arthritis in her hands and has suddenly developed some kind of Pneumonia. She is now on ecmo system. (replacement lungs) so her lungs can rest and recover from the infection. Has any one else experienced this? She was on the ventilator for 2 days needing 70% and 100% from the machine and the machine was doing damage. She has now been moved over her to another hospital. She has been sedated for 3 days now. They said it will be a minimum of 2 weeks and the guy next to her has been on this machine for 8 weeks.

I have questions about the sedation . Will she have a more peaceful dream experience if i put muffles earplugs in? She wears them at night. The ward is very noisy.

Also, the hospital she has been moved to is 2 hours away. I have a baby so can't visit everyday. Does anyone remember their relatives there. Does it help. If so i am considering renting a flat nearby if i can. In what way does it help. Do we enter the dreams and hallucinations? Im a singer, if I sing softly will that help?

My mum already takes anti anxiety drugs which she has been on for 20 years but is not being given the same ones. Will this effect her in her sleep. She normally wakes up at 5pm everyday (when it is most noisy in hospital now) and goes to sleep at 3am.

I want her to live but i am so worried about her being so uncomfortable and in a night mare not to mention how she will be afterwards to recover. I wonder if she would want all this. As her carer i feel so responsible. Do I actually have any choice if this goes on too long on machine?

I also feel like i need counselling as i feel anxiety for her. I feel my friends and family don't want to hear about this all the time and i don't blame them. I am trying to think positively but i just suddenly feel sick and shaky all the time and start thinking the worst.

So many questions.

It would be great to hear back from someone about any of this.

Thank you.

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Hi ellie2014, I was sedated and ventilated for a month and during this period I was connected to an ecmo Nova Lung.

I'm fairly sure that machine is a major reason that I'm still here today, 4 years after my ICU experience. :)

novalung.com/

rlbuht.nhs.uk/OurHospitals/...

I found this link explains things a little better.

I was aware of the machine noises around me and they triggered certain dreams, of coarse I only worked this out after I came round and started to hear all the different sounds going on around me.

The dreams were incredible and life like and I still remember them very clearly after 4 years.

Tony x

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thank you so much for your reply. Its a great comfort. In your opinion is it better for me to try and go in everyday if i can? Did you have relatives there everyday and did that affect your dreams for the better? My mum has always been a vivid dreamer. I want to help her be in a good place and not a bad one. I played her some of her fav songs from my phone yesterday. I also put earplugs in her ears to block out sound after i left. Do you think that will help. Any other ideas? thank you

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Hi ellie, even though I was fully sedated for a month my wife and family were there every day. Some of my dreams were definitely linked to what they were saying to me. My wife was telling me that she would come and watch football with me when I recovered (she hates football), in a few of my dreams I was taken to see Leeds united as a VIP fan as a surprise, in my dream I realised I had been very ill but had recovered and my wife and family had paid for this special treat so yes talk to your mum as much as possible, it could really help.

It was when I was on ICU after sedation that I realised that the sounds of certain machines around me were the triggers for some of the dreams.

I would say that my mind was very active while under sedation and most of the dreams were good ones.

Tony x

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I was ventilated and put on a oscillator which I do not think is the same in any way. However I was in an induced coma for 12 days and I was in a different world to reality. Even though some of my experience's did have a relevance to what happened at my bedside. I was told that they think that they can still hear so a song from you would not do any harm. It may help you too. Ask if they have a diary if not start one get other visitors to leave a few words, I would say that you have a life as well and it seems you are doing the best you can.

I would suggest a visit to your GP to discuss how you are feeling.

Find a close friend that will listen to your worries it will help as you need a release.

I hope things improve for you both.

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thank you so much. Yes we are writing in the diary its a great idea. x

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Dear Ellie

So sorry to hear about your mum and it must be such a worry for you especially with a baby to look after too. My husband was on a ventilator for three weeks last summer but didn't suffer any nightmares or dreams that he can remember although he has flash back to images and feelings that surrounded him during that time. He is only here now because of the treatment he received although he suffers the vagaries of being in ICU such as delerium and anxiety. When my husband, Russ, was admitted to ICU, we met an outreach worker who started a diary for him. His nurses and doctors and me were encouraged to write in the diary twice a day about what treatment he was being given, what we had been doing at home etc so that when he woke up those days of sedation would not be a big black hole. It has been a fabulous tool for him during his recovery and he reads through the diary continually looking for clues to what he might have been dreaming about..

We attend an ICU support group every six weeks called Steps which is a fabulous opportunity for patients, relatives and carers to talk to each other about their experiences of ICU. We have met lots of patients who suffered nightmares and strange experiences whist on ventilation but with the help of the support group and counselling are beginning to recover. ICU staff attend the meetings, including the consultants, so are on hand to answer the many clinical queries Russ and fellow patients have. Perhaps you should ask the ICU unit where your mum is if they have a similar support group that you could attend or you could have a look on the following website

icusteps.org/

which would give you further information about regional support in your area.

I do hope your mum gets better. Don't be too worried about how long it takes her to fully wake up after the sedation is reduced. It took Russ at least five days to open his eyes and recognise us although he had a tracheotomy fitted so was unable to talk for a little while. I really feel for you and your family throughout this ordeal but keep positive and never be afraid to ask questions of the ICU staff either. Sing to your mum, talk to your mum and kiss your mum as she may well be able to hear you. Good luck and cuddle that baby of yours xx

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thank you so much for all this info. We will definitely attend the steps. such a lovely message and a great comfort. Yes its very hard for the family too as I'm thinking the worst as well as trying to think the best. Its very emotional. Its great to hear your husband didn't have nightmares. x

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Hello , just to let you know that my mum is now on the trache and has eyes wide open. As you experienced , she can't speak yet or move her arms and hands but she is responding to me and even smiled slightly when I said they were going to brush her teeth. I know it's going to be a slow road ahead . I'm hoping she gets some sleep ! I'm keeping hold of the happy feeling I feel that she is still alive and that I am so lucky that she is ! Thanks for your messages! Xx

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I'm delighted for you and your mum Ellie. Keep strong. Not being able to sleep is all part of the recovery process. I've just been reading about delerium in a little leaflet I picked up in ICU the other day. Look up icudelerium.co.uk. This is a link set up by Dr Valerie Page an intensive care consultant at Watford Gereral Hospital who has written a very informative leaflet about the subject. Fingers crossed for continuing recovery. xx

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hi ellie i have been thinking about you each day and i am so pleased that you at last have this good news to share, i think the main thing now is to keep telling her how well she is doing, she will need all the encouragement that you can give to her. it took me ages and ages to wake up properly so dont be to worried if it takes some days, i just remember my daughter talking to me all the time and that was such a comfort even if I did not always respond. and as you say you know it will be a long road ahead so make sure you take time for you. when i left the hospital that i was in they did an aftercare service that included my daughter as well as me because although i was very ill, my daughter, like you i'm sure, had a very traumatic time and needed just as much help as i did so take care and keep us posted xx

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Thank you so much . I am here at the hospital taking a break . She has a further lung infection and isn't responding to me today so it's so reassuring to read from you that she can hear me and is a comfort to her . I will keep telling her I love her and how well she is doing . Will keep you posted . Xx

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HI Ellie i cant belive how much your mum is mirroring how i was, i too had an infection and they could not get my temperature down but in the end they did it and i am well.

at one point the medics who took care of me told my daughter that what she was seeing in me was just a reaction and i did not know how to let her know i could hear her so when she said 'mum we have to go now' i tried my hardest to let her know i could hear and i screwed my nose up and tried to shake my head, this was when she knew for sure that i could hear her. also because they could not wake me properly they thought that i had had a stroke at one time but i hadnt i was just a sleey head so hang in there.I feel for you so so much because i know that you are feeling just like my daughter, please carry on letting us know how she is doing xx

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Hi. My husband was in an induced coma for 9 days and he has absolutely no memory of it - no dreams, no awareness of my presence. He has though asked dozen of times what he looked like and why I didn't take photos. I know this sounds difficult to do in ICU but it would have given him some closure.

You need to look after yourself. It has taken longer for me to recover than my husband. Ensure you have a support system, whether friends or support/medical groups. Good luck.

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thank you for the message. Thats great to hear. yes i can imagine it took you a long time to recover as well. Best wishes. xx

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One of the senior consultants at the ICU Steps meeting has invited Russ to visit the ICU and they will show him the machines he was attached to, the bed he was in and also to meet some of the staff who cared for him. I'm forever going on about the "green room" (relatives room) where I sat with my adult children to receive the news that Russ would not live through the night. To visit the ICU would be closure for Russ and probably for me too so once he is back on his feet we will accept the consultant's invitation and pay them a visit. I have unpleasant dreams about that little green room as do my children but Russ DID survive that night and continued to get well and is now home with us, sitting in his battered old armchair watching the TV as I type - not fully recovered, but able to enjoy being with his family and friends so never, ever give up hope. xx

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Wow thank you . So good to hear. You have really been through it . The hospital have just said that they are taking her off the ecmo machine in the next few days and starting to 'wake her' up . I know it's good news and I will have to toughen myself up to get through the next few weeks at least . X

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Fabulous news Ellie. You don't need to "toughen up", but you do need to stay strong for your mum. She will probably be confused and frustrated when she wakes up but that's OK, it is normal and don't forget, it might take quite a few days before she is fully awake even though she is not receiving sedation, so don't worry about too much about that, easier said than done but one day at a time, tiny steps. Good luck and keep us posted. xx

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will do. thank you. So great to have this info from someone that has been through it.

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My mum has now been taken off ecmo after 5 dats and I'm waiting for her to wake up . Could be today , tomorrow or next week . Nervous ! The next phase is awaiting. She is now on 35% oxygen so they will be seeing if she can breathe herself or do a tracheostomy . Will see . Hoping and praying she will be lucky . Still no idea what the infection in lungs is and why it's not clearing . But it must have cleared a bit for then to do this .

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I was on ECMO 2 years ago, I don't actually remember anything of the 17 days I was on ECMO and in a coma.

I know some people do have hallucinations and strange dreams though.

Dr's told my family that people can hear while in a coma! So singing, talking , music all helps.

I know of people surviving after 50 + days on ECMO!

For me the worst was after, waking up in the ICU wondering WTF happened (excuse the phrasing but it's the only thing strong enough) as well as the rest of the time in ICU, I would live for visiting time. My memories of it , however are scattered and confusing.

The road to recovery is long and winding, I thought that when I got out of hospital that 2 as it..... I was fine..... I had no idea of the uphill climb that was before me!

Having said that, don't give up....With love and support is is Ok! .w

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Hi there, I just happen to come accross your response and since it's more recent would like to see if you can give me some info. About your experience and the process while on ECMO and off ECMO. My sister has been placed on ECMO since Sunday due to infection in her lungs and on ventilator that sometimes is on 100% and some days 75-50%. They are also doing dialyses to get rid of the flueds in her lungs, so far the infection hasn't badged and the doctors are only giving us 20% servivl chance. Wanted to know how long did it take you and if you had any other complication. I'm so desperate any information would be greatly appreciated.

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Hi Ellie 2014,

I have just read your story of 3 years ago. I really hope your mother made a good recovery? I ask as my father is going through the same thing, for the same reason (methotrexate/pjp pneumonia).

Thank you,

Rosie

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