partner trouble waking up

[Arsenalfan1986]

my partner 5 weeks ago had a massive bleed on the brain stroke in which she had to have part of her skull removed to relieve pressure . She has been off of sedation for roughly 2 weeks they have put her on a tracheotomy tube she has had a lot of movement in her right leg and limited movement in her right hand but pretty much zero movement on her left hand side of her body . The things I’m worried about is when her eyes are open which is rare (this could be because she could be tired and I miss it ) but when I do see her eyes open she seems to focus then zone out also with the fact she isn’t fully doing things on command I am starting to worry that there is something wrong and trust me I feel truly blessed she made it through while others have been less fortunate it’s just a worry and am wondering if anyone has any experience to talk about this with me I will also add she has fluid on her brain they still Havnt attached a plate or the skull back so I don’t know if that will attribute to this

Thank you all

[Sepsur]

it can take a fair while for someone to come to properly.

[Arsenalfan1986 in reply to Sepsur]

but is it normal for the eyes to not be able to focus without zoning out like your not even there and lack of command I mean yet again I have no knowledge of any of this just sick with worry as info wise the hospital have been minimal and i sit pretty much every night thinking about it constantly

[Sepsur in reply to Arsenalfan1986]

she may still becoming off the meds & maybe experiencing icu delirium- which can make someone appear vacant

[Sepsur in reply to Arsenalfan1986]

cc-sn.org/information

[Copse77]

Waking up from an induced coma is nothing like shown in films. We went through this almost 5 years ago ; different illness, sepsis from flu but common rollercoaster of emotions of highs and lows. Here is a link to our family story we wrote to provide hope to other families going through this. It’s important to remember everyone is individual and will respond in their own time I hope your partner makes a good recovery

ecmofamilysupport.com/ecmo-...

[Sepsur]

how is your partner doing now?

[Arsenalfan1986 in reply to Sepsur]

her eyes are still kind of fish like side ways if that makes sense she is doing more on command like thumbs up waving and blowing kisses attempting a smile she was sat in a chair for 2 hours yesterday to see how she went . They are trying to get her doing hour long intervals without the tracky they say she has got too used to the push and that she can breath on her own she has not moved on her left side and appears to finally start waking up slightly I mean it’s massive for me as I did worry about a vegetive state I’m not going to lie this is 5 weeks and four days in but she just took a massive leap I feel even though they still got to fit her with a plate still and rehab but it’s still early days so it’s positive but we will see normally where there is a good day a bad one follows not so far behind thank you for asking

[Sepsur in reply to Arsenalfan1986]

get her another cushion - I found sitting agony

[Arsenalfan1986 in reply to Sepsur]

do you have any cushions that worked well for you or is it an any kind of cushion helps deal ?

[Sepsur in reply to Arsenalfan1986]

talk to the physios about those smart foam ones. Because I’d lost so much weight - my pressure points were so exposed & agony

[Misterpaulwood in reply to Sepsur]

Five months on and I still have to sit on 3 pillows, like the princess and the pee...

[Sepsur in reply to Misterpaulwood]

🤣🤣🤣

[Tedsdad]

This sounds so difficult. In truth the routes that we all took to ICU are different and the more specialised they are the more difficult it is for anyone to jd erstand the detail. But one think I think many of us remember is what seemed like the endless sitting. They were determined to get me out of bed even if it was just for sitting. I a, sure they were right but whatever put you in ICU as you come out of it a numb bum is a numb bum. And it is miserable. So anything you can do to help relieve this will be really helpful I am sure. As time goes on there are certain details you forget. For me this was one of them. It is so non dramatic but it is absolutely miserable

[Arsenalfan1986 in reply to Tedsdad]

is there any cushions you would recommend

[Tedsdad]

to be honest I just suffered but I do think that something inflatable maybe even an old fashioned rubber ring kids swimming aid would have helped.

[Arsenalfan1986 in reply to Tedsdad]

thank you I bought her a memory foam one hopefully that aids her a bit more

[Sepsur in reply to Arsenalfan1986]

it will

[Arsenalfan1986 in reply to Sepsur]

they are looking at putting her in a level one rehabilitation unit is that normal protocol and if so how long does that take silly question it’s like how long is a piece of string

[Sepsur in reply to Arsenalfan1986]

After 90 days in ICU - I was 20 days dropping through various wards until 10 days in rehab 😊

[Arsenalfan1986 in reply to Sepsur]

did you rehab in a separate unit to the hospital?

[Sepsur]

for some reason, I was an experiment so instead of going to the normal rehab which was at a different place about 15miles away - I rehabbed in a new unit in hospital which was shit and hadn’t properly converted from geriatric/dementia ward - so we were a mix - worst time in there.

It spurned me on to get out of there I guess

[Arsenalfan1986 in reply to Sepsur]

that sounds awful this is what makes me worry her going into a rehab place I seen how a lot of places are disgusting towards people

[Misterpaulwood in reply to Arsenalfan1986]

Most rehabs are great just they don't have enough staff so you spend allot of time just lying around staring at the walls, the sooner back home the better, it's a amazing feeling to finally get out, 15 weeks in hospital is a life changing experience without the medical complications. God speedPaul at the Steampacket Inn Knottingley

[Misterpaulwood in reply to Sepsur]

My five week rehab I did in five days, I pushed myself so hard it was a total wall of pain, but after months in a coma and icu I was determined to get the hell out.Regret it now as I have had to do all that strength training and relearning to walk myself rather than with there support.

Felt so good to get out though, so would I do that again.... Of course I would!

I was free!

[Sepsur]

I didn’t mean to alarm you, that’s not helpful - the sooner a patient gets home, the better but I wasn’t ready to come home - day 118, I was & day 121, I came home. I was so far from mended but I would not have improved any further whilst in the facility I was in. I was institutionalised- I needed to think & act for myself. I’ll PM you 😊

[Mich898]

Hello, I'm sorry to hear what happened to your partner. My dad was in this same position last year. He had a stroke, then a massive stroke. Lost movement in his left side and had part of his skull removed. He didn't respond to pain and he was off of sedation for so long, but he never made it. Also had tracheostomy because the doctors wanted to take him off life support ..I hope your wife gets better I really do. With experience, my dad was gone after 2 weeks. He didn't respond to pain, or commands. With a good hospital it may be different for you. the hospital my dad got put in was very poor 😭. Once again I'm sorry about your wife... If you Wana talk about it let me know. Does sound like she's slowly improving. But it does take time.

[Arsenalfan1986 in reply to Mich898]

I’m really sorry to hear about your dad this is why I feel guilty in feeing upset and worried because truth be told it could be so much different and I should see myself lucky she is in the position she is the hospital she is in is very good in a lot of ways but in terms or relaying information they are pretty poor one day you could walk in and literally no one is about to talk to regarding progress I fully understand if they are understaffed just prob the worst time for the silent treatment your mind goes to some horrible places I’m truly sorry for your dad though mate even though I have no knowledge of him he would be proud of you offering strength at a time like this to a stranger

[Mich898]

Don't feel guilty. Different outcomes happen for everyone yeah the hospitals are poor. What we did was everytime we saw the doctor we had to secretly record audio of our conversations with them.. This is because things happened so fast we didn't have time to think of our next move.. different doctors say different things we noticed. . We had to keep prompting them for progress each time rather than the other way round.. If you're looking to have her moved, do make sure this happens. Find a place which cares for stroke patients. We tried to move my dad but apparently he wasn't in a state to be moved in other words because he was quite low on the Glasgow coma scale. they had no hope for him. So do try to push thanks I'm only in my 30s and I'm still in shock I lost him a year l8ter 🥹 Michelle.

[Arsenalfan1986 in reply to Mich898]

my heart really goes out to you be strong I know that is easier said then done but as I said he is looking down proud you have been through so much I mean I have been dragged through hell and back and what I am going through is but a mere picnic at least I still have my partner here honestly though hun thank you for the support and kind words I honestly don’t know how you manage to find the strength

[Mich898]

Thanks I have a different way of looking at things now 😊. I do hope your partner recovers and I know it can be hell at times of course with everything going on.

Anytime. Feel free to drop me a message if you want.

[Arsenalfan1986 in reply to Mich898]

I might take you up on that offer and talk your ear off lol thank you hun your help it means the world atm a lot of days it’s hard to even find a way to get out of bed so thank you for listening

[Mich898 in reply to Arsenalfan1986]

Haha no worries. I'm not on here too much, but if you have fb u can add me there. I'm interested to know your partner's progress 😊

[ElleEmBee]

I was in ICU for 125 days then went into normal ward for 6 weeks before going to rehab for 4.5 months. I was in an induced coma for a few weeks and it took another few weeks for me to wake up. During the waking up period I would sometimes have my eyes open but would not be interactive. During this time I know know was when I was hallucinating and having trauma dreams. I don’t remember my husband talking to me at this time at all, just the dreams. So I technically woke up at the beginning of Jan last year but I don’t really remember anything until about February. That’s when I say I woke up.

Rehab was ok. I got about 45-1 hour treatment most weekdays and nothing at weekends. It’s not at all like you expect it to be. Spend a lot of time looking at walls and windows. Definitely changed a lot when I came home as you have to in order to live your life.