Hi, my mum has been in ICU for 5 weeks and has 'severe muscle weakness and low tone' Im desperate for them to start rehab. What can i do?

My mum went in with Pneumonia 5 weeks ago and now has 2 holes in each lung due to over ventilation and psudamonas infection in each lung. She is responding to antibiotics but they said it will take 6 weeks minimum. She is starting to breath on her own for short periods (3 hours yesterday) but they still won't start the rehab (only on her lungs) and have given various reasons saying she is too ill. She has been out of the induced coma for a week and has delirium so not responding. Im pretty sure the delirium is partly due to not being able to move or speak, lack of sleep and the drugs (fentynal and Clonodine) She has Fentynal for the drain that is taking fluids from one of the holes with infection in near the rib cage.

She can't move any of her body except her neck and face. Im desperate for her to start moving again and i intend to go to the consultant tomorrow and Monday and say enough is enough.

I feel it is dangerous for her recovery to leave her any longer and have read it could take 2 years for full recovery.

Has any one else been incapacitated for 5 weeks or more and did you recover ok with rehab?

Any ideas would be most grateful.

Ellie x

17 Replies

  • Hi ellie, I have been there and worn the 'T' shirt as you might say and I can confirm that even now 4 years after 2 1/2 months in ICU I am still improving so yes its a long and hard recovery.

    I was sedated and ventilated for 4/5 weeks and lost pretty much all of my muscles. I clearly remember thinking my daughter was sat on my hand when I tried to lift my arm, It came as a bit of a shock to find I was unable to even raise my hand off the bed and at this point.

    Physio started with me a week or two after coming round, 3 young physio's held on to me and they sat me on the side of the bed for maybe 10 minutes, I can tell you that was when it really hit home that I had a long hard road ahead, I was breathing flat out on very high oxygen as though I was running a marathon and yet all I was doing was sitting on the bed. I was very glad to return to the sanctuary of lying back down on that bed I can tell you.

    Those physio's came back every day and slowly but surely they worked their magic by gradually increasing the difficulty of my daily exercise/torture and even though they put me to hell and back I knew it was the only way back for me so I gave it my all and they responded with loads of encouragement and praise.

    I left ICU after 2 1/2 months and at this stage I was still only able to sit in a chair for 3 hours before being exhausted whilst still on 4 to 5 liters of oxygen.

    3 &3/4 months after first entering the hospital they finally got me walking again, it was the most brilliant feeling and one that I'll never forget. Ok I only managed 10 meters before collapsing back on the bed, I cried my eye's out with happiness along with the young physio because I knew then I could get back home soon and get some of my life back. :)

    Well here I am 4 years on and I can get to the top of the Malvern Hills with the aid of my oxygen back pack and I can tell you it is very very possible to get back from the lowest point imaginable.

    Your mum sounds like a fighter, so tell her from me to stay positive and do everything the physio's ask of her and in time she'll get out of that hospital and return home.

    Tony xx

  • Thanks again Tony. Me and my brother are so inspired by your story . It keeps is going :-) xx

  • Hi ellie, I remember quite clearly the period when I still had my trachea and was too weak to move. I used to get very frustrated that people couldn't read my lips and understand me, I was desperate for a drink but that was forbidden so I had to settle for ice cubes to suck on as a rare treat. I used to really look forward to those ice cubes. After a while the nurse came along with a device that I could hold which enabled me to talk for short periods which was great for me but not for my visitors. :) .

    Stay positive as everything moves slowly in ICU.

    Tony xx

  • Hi Ellie although i wasnt sedated nearly as long as your mum and when the physio's started with me i could'nt even hold my head up, i could not see properly, i could not even pull a paper hanky out of a box but i knew that if i was to make any progress at all i needed to fight and this i did. my only exercise at first was to try to get my hands up off the bed as much as i could, i did this as much as i could, even in the night when i couldnt sleep i tried and tried to move my hands and after a while i could lift them up right off the bed, but i will never forget the day they got me out of bed for the first time, my legs wouldnt hold me and if it wasnt for the physio's on either side of me i would have gone down but they made me take a couple of steps and each day with their help and they they increased the steps but it was a long long time before i could take a step on my own, when i at last got home the physio's came to the house and gave me exercise to do at home, it was very hard but my daughter used to do them with me but it was to be many months before i could walk for any distance. i dont doubt that it will take your mum a couple of years to recover because it took me over 12 months and even now i am still i am a little tired. the most important thing is for your mum is to remain positive and i know how hard that can be but I, like your mum has a brilliant daughter who pushed me on when i got a little down, because i tended to think that i was never going to be able to go for a walk again, i was never going to get strong enough to take a shower on my own and certainly i was never going to be able to read a book, use my mobile phone or my computer again but with hard work and determination i got there and i am sure your mum will too

  • Again i say if you are worried about you mums progress, speak to the doctors and tell them your fears and ask them to explain exactly why she cant start the physio now even if it just hands and legs in bed and when they think she will be ready, and again i would record the conversation so that you can sit at your leisure and go over it all, because when you are so worried you tend not to take it all in, if they can make you understand why they do the things they do i am sure you will a feel little more at peace its the not understanding that worries you , hope you get answers that put your mind at rest, talk to you soon, Isabel xx

  • Hi Ellie,

    I was in ICU and sedated twice in a seven week stay nearly three years ago. I too suffered delirium and yes, you're right; critical illness and drugs cause this but there are drugs that can help. I needed a lot of reassurance and orientation - even today, I still feel that some of those incidents I imagined did happen - but was fortunately, able to communicate. I really feel for your Mum and you not been able to do so together.

    My abdomen was kept open as I was in and out of theatre so I couldn't possibly imagine what on earth a physio could do with me - they had me cycling at first! They do their magic on sedated patients too and start with keeping the chest clear of secretions. Please think of it as the body repairing organically, internally first; anything else is a tremendous effort like others have described. Perhaps you could help by gentle massage? She may experience some pins and needles as hasn't needed to use her limbs for some time but the comfort touch can bring is quite something.

    When I was first assisted to sit up in bed my back felt like jelly, like a baby; no strength whatsoever and I was so dizzy. Small, slow, assisted steps I progressed (still with open wound) from physios to Zimmer at the ripe old age of 37.

    Because I was in a specialist hospital having been transferred from local I didn't get any rehab/physio on discharge. It took me fifteen minutes to first get up the stairs at home and I needed a lot of physical help from my partner. Because I had a newborn baby to care for and a loyal dog, I HAD to push myself.

    It is a long and bumpy road; my psychological journey has been almost as hard but many good things have come out of this for me. My partner seldom talks about his experience with a "I'm fine" but I suspect, like you, there may be times when he is not.

    Good for you for consulting the site and seeking help and all the very best for you, your mum and family x

  • Hi Kulta, sorry I didn't reply to this personally. Your story Is amazing . Thanks so much for sharing and writing . Xx

  • My goodness what an amazing story of courage and determination ! Do you have an ICU Steps meeting near you ? Your partner would really benifit from the support .I think I would have gone round the bend had I not had some wonderful support and understanding.Best wishes x

  • I am so sorry to hear about your mum. I was in a coma for two weeks and had two surgeries during that time. I was heavily sedated, but was not on a ventilator. I still had severe muscle wasting...you lose 3% - 10% of muscle a day while immobile. My daughter was my advocate and she made a list of questions to ask the doctors each day. She would massage my arms and legs and speak to me even though I was delirious, this helped a great deal. As your mum gains consciousness she will think many of her delusions are real. So keep notes to help her.

    I still remember when the physios stood me up for the first time, I cried. I had a very long road of physical/occupational therapy after three weeks I could walk very slowly with a walker (took a year before I could walk totally unassisted). Best of wishes, your mum is blessed to have you.

  • Thanks so much for this . I will be referring to your message! Xx

  • Thank you all do much for your replys. I saw the doctor today hoping to demand Physio for my mum but instead ended up crying my eyes out because it's clear they are doing things their way and they need to get her infection and lungs sorted first . She is so frustrated and I can see her mouthing 'help' very slowly. The doc says she has 'critical illness myopathy' and will be 6 months at least more in icu. I'm feeling pretty weak and not sure what else I can do. Playing her , her fav music and massaging her is nice to do do I'm glad to hear (twash) this helped you. I'd love to find out if there's a steps meeting nearby. Not sure how? (and jan) thanks as well Kulta , Isabel and Tony . I'm wondering if the frustration at not being able to move is unbearable for her? If it is , she shouldn't be allowed to suffer like that. She can't say anything to us. It's like torture? But all meant to be worth it if she pulls through. I know I should try and put it out my mind but it's in my nature to keep trying to help and make things Better and get to the truth. Xx

  • Hi Ellie, sorry to hear your mum is still in ICU. Think I mentioned before that really the only thing I can remember from my 2 months in ICU is trying to communicate "get me out of here" which is like your mum's "help" - it's a pretty natural thing to want! However please don't think that it's the same thing as someone not sedated would experience it - it's a very misty world whilst you're in there. Just try and be a calm, positive presence and keep doing what you are at present. This stage is harder for YOU than her - BELIEVE ME!

    Once she returns to the ward and then rehab is when the hard work for HER starts! Oh my do you ever HATE the physios :-) Really make sure she PRACTICES exercises - especially breathing ones.

    Annie xxOO

  • Thanks Annie! Will do! Xx

  • Hi there ,there is a list of support groups on the ICU Steps web site,may I ask where you live ?web site is icusteps.org do hope this helps,keep strong ,you are doing a great job,you also need a friendly understanding face to talk to .rather than a web site ! x

  • Hi Ellie,

    You can also download the free intensive care guide at icusteps.org which will hopefully answer some of your concerns.

    I was in ICU for 3 months with double pneumonia, severe sepsis, MOF and ARDS, it was almost 11 weeks before I was well enough to start physio, I remember the first time they got me out of bed it felt like torture but with in 3 weeks of rehab I left hospital, a day I thought would never come.

  • how is your mum today Ellie Isabel xx

  • So my mum has been on and off the ventilator and has done 24 hours without. So the weaning is going well. Still has the infection but hopefully the holes are getting smaller and will know for sure when they do next chest scan . They are doing a bit of Physio and stretching her - thank god. I wrote to the head of Physio and there is talk about a special chair she can sit in. Dying for her to get out that bed for a bit! As I'm sure she is as she is still delirious but her frustration and discomfort is still clear and real to me. She is a bit more with it but still not obeying commands . Sometimes she nods straight away when I ask her questions and she's mouthing things to me but mostly I just can't make out what she's saying . She won't or maybe can't move her legs when I ask her. She is able to rock them side to side and is lifting her head off the pillow and moving her shoulder and upper back muscles . So altogether seems to be getting better but very very slow progress. Xx

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