Ecmo and icu

Hello, my partner was admitted to A&E a week ago and put on a ventilator with severe pneumonia. Nothing helped until medical staff flew down from London to put him on ecmo and transferred him to London. He hasn't woken up after they stopped sedative 4 days ago, but he has eye movement, breathes alongside the ventilator support. I'm just praying his brain is just so deeply asleep to help him recover. He has a lot of pain from fibromyalgia and spinal surgery but has such a high pain threshold I'm just hoping that when they do pain stimulus to wake him up he just doesn't notice. I'm terrified of what is next. He survived ecmo against all odds, his BP has stabilised. I thought we were winning baby steps and now this grenade is thrown at us. There is a danger of brain damage and I don't know where to turn. Our world consists of just the two of us, the only support network I have are the icu staff who are like angels in scrubs. I just needed to share. Good health and safe days to all of you

[Videodragons]

I was in a similar position with sepsis – I was in a coma for 5 weeks and it took the whole of the last week to wake me up.

Here I am, pretty much back to normal 3 years later. Good luck, and bear in mind that ICU staff seem to feel that the kindest thing with relatives is to be a little pessimistic.

[Sepsur]

I wish your partner a speedy recovery, although my recovery was much slower & arduous than I could ever imagine. Like @videodragons I am 3 yrs out of ICU. My family found the critical care staff brilliant but were terribly confused by the lurch from optimism to darkest pessimism

[Copse77]

I am sending you hope that your partner will make a good recovery. My brother was on a ventilator then put onto ECMO. He was on ECMO for a relatively short time but then it took a month for him to start to come round properly. I will send you a link to the ECMO family support at Wythenshawe where you can read other families stories of their loved ones recovery. My brother 18 months on has made an excellent recovery. Here is a helpful guide to ICU. If you can private message me using chat I am happy to answer any questions you have. Very best wishes.

icusteps.org/guide

[Hidden in reply to Copse77]

Thankyou Copse77. He opens his eyes on command today. Unfortunaly he has developed a rare bone marrow infection now and they are trying to fight it while buying him time to recover. I keep clinging onto tiny victories but am fully aware he is critically ill. I shall take time this evening to read the link you sent. Again, thankyou for your reply.

[Copse77 in reply to Hidden]

Wishing you and your partner all the very best for a good recovery.

[Copse77]

Here is a link to ECMO family stories. ecmofamilysupport.com/ecmo-...

The best advice we were given by a lovely consultant was remain hopeful.

[Copse77]

This explains what happens in an induced coma. It takes a while for all the sedation to wear off especially when the body is trying to recover from the infections. intensivecarehotline.com/qu...

[Ache-Witmer]

Hang in there and don’t give up hope. My brother was in a similar situation. His EEG showed deep coma and the attending doctor that week called in palliative care and lectured us on hard decisions we had to make. After 7+ days he wiggles one toe on command. He started waking little by little every day. He is a year out and has fully recovered. ( he had flu, pneumonia, ECMO for 21 days, ventilator, dialysis, chest tubes, and much more. ). Prayers to you!!!

[Hidden in reply to Ache-Witmer]

Thank you Ache-Witmer. We continue to fight, now a rare bone marrow infection. I continue praying and giving him all my strength to continue fighting.

[Catdancer01]

I had ECMO in Feb this year for 2 weeks after being put into a coma, then icu for 2 weeks in coma, it took me 2 weeks after that to fully come round still in the. ICU. To make me wake up they allowed my 2 young boys in to ‘show’ me I had to wake up and come back to them. Keep talking to your partner even if you think it’s doing no good, as on some level I knew I was in hospital but couldn’t wake up. In some ways I didn’t want to wake-those drug induced coma dreams are pretty weird, but also very vivid and real. Some of them felt like a warm protective blanket that I didn’t want to leave!

I know every persons situation is different, but hoping your partner has a positive outcome.

[Offcut]

It is good to talk to anyone and everyone that wants to listen. I was in ICU 32 days and they told the Wife at least twice I was not going to survive the night! That was back in 2008.

Be Well

[TheGingerDancer]

Hi Kasmir, firstly.... I'm so sorry you're going through this, I can't imagine how you must be feeling. I was on the other side of it all.... on ECMO for 2.5 weeks.... coma for 4. All I can say is have faith in the human body. It's unbelievable what it can achieve and how it can heal itself. Everything just takes a little time, and that unfortunately is something you have no control over. Keep talking to your partner, they can hear you!!! Sending a lot of positive thoughts your way. You will get through this!

[garycom]

Just wanted to share my hope and good wishes. I was in a med. induced coma for a month. Don't give up hope and keep visiting and talking to him. Let us know how things go.

[AGPT]

Kasmir I'm thinking of you deeply. This may sound a strange thing to say but I hope it brings comfort. Having spent many weeks in a coma, then a further 7 months graduating from ventilator in ITU to a ward for the last 3 months, I always felt that the experience was made humbling by the love of my family and the humanity, professionalism and friendship the ICU team exuded during my care. I say this because all of these people made the experience far less distressing than it probably looked from the outside. Your partner maybe going through a crazy dream or two but keep talking (a bit of music through headphones?) and have faith in the ICU team. So long as there is a way, they will find it. They did it with me and I threw sepsis at them 8 times, total organ failure and a few other things I won't bore you with. Good luck to both of you.