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This topic contains 6 replies, has 4 voices, and was last updated by  nora 3 months, 3 weeks ago.

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  • #1189

    nora
    Participant

    Hello
    Just wanted to make contact for any help or advice

    27th February of this year my 25 year old daughter went into cardiac arrest and suffered a hypoxic brain injury which has left her with severe brain damage.
    The medical profession don’t know why this happened and cannot explain it – My daughter was extremely fit young woman.
    We spent 67 days in the icu unit. MRF scan has revealed global damage and they gave no hope of meaningful recovery. They said she probably wouldn’t come of the ventilator which she did. They said she would get a chest infection and need a tracheotomy which has not been the case. Nero disagree with icu and believe that she has a young brain. We are now waiting for my daughter to go to rehabilitation but so far no bed is available and she is in cardiology.

    We are as a family in pieces. I am so distraught for my daughter my family and myself.

    I have now had to go back to work and just doing day to day things is exhausting.

    I go to work then visit my daughter and then climb into bed. Making do with copious amounts of coffee wine and pain killers and any prescribed drugs I can get.

    My daughter is now out of coma but state I am not sure. Sometimes she can track and do some simple commands but sometimes she cant. Neuro had advised minimal stimulation and we have been told to expect any very slow recovery.

    She can now manage her own air ways and hold her head up so we can get her out daily in her chair and push her round the hospital grounds.

    This pain is unbearable. I asked if my brain could be used to help repair hers but the answer was no. I just want to die but have three other children who all need support. I am at my wits end.

    Please please can anyone offer any support and or information.

    Warm Regards

    Nora

    #1211

    Brain Injury is Big
    Participant

    Hi Nora – firstly so sorry that we missed your post – we really do understand the pain you are going through. I fully understand where you are coming from (I’m Lynne and have a son who was 25 years old when he had his car accident) Every brain injury is very different and so is the outcome. Sadly this is a long journey you are on… If you would like to chat with one of us please ring 01483 770999 and we will be there to help and support in any way we can.

    #1218

    judy
    Participant

    Hello Nora. I’m so sorry to hear about your daughter. I’m sure it must seem like a lifetime to you, but in terms of severe brain Injury it’s very early days and at this stage I think it’s almost impossible to say how much recovery can be made.

    This is a very long, roller coaster of a journey and the toll it takes on families is immense. Just as you help to take care of your daughter, you need to take care of yourselves too, and make sure you eat properly and sleep. I think we may have spoken on the phone previously, but please do ring if you need to talk some more. It really does help to share when you’re going through such a difficult time.

    Take care for now.

    Judy
    Xx

    #1232

    Flo
    Participant

    My heart goes out to you, Nora, as your post reminds me of the frantic state my husband and I were in following our daughter’s hypoxic brain injury–she was also 25 years old at the time. I remember the unbearable pain and I’m not surprised that you’re at your wit’s end with 3 other children who need your attention as well.
    I know it doesn’t seem much but I’m impressed that your daughter has avoided chest infections and hasn’t needed a tracheotomy after coming off the ventilator. It’s wonderful that she sometimes responds to commands and that you’re able to push her around the grounds of the hospital. Our daughter is classed as ‘minimally conscious’, but she doesn’t respond to commands, has a trachestomy, and because the brain damage caused her spine to twist, she can’t be transferred into a wheelchair. As a result she hasn’t been outdoors since her brain injury in 2013, except for rare transfers to and from nursing home to hospital.
    I sincerely hope your daughter will continue to improve and that you will find support for yourself.

    Flo

    #1242

    nora
    Participant

    Hi Flo

    Thank you for making contact with me
    I really dont know how to survive this on one understnds unless they have been through it and support is very hard to come by as these things are rare

    I dont find it is getting easier only more difficult and I keep gwtting so much inaccurate information I am now told my daughter isnt following simple commands

    Every day is a living hell

    My daughter isnt there yet she is its a death without a death

    How have you managed to cope for so long

    I find it difficult to work All I do is go to work go to the hospital and then crawl into bed

    I have completely lost my identy if that makes sense

    Warm Regards

    Nora

    #1266

    judy
    Participant

    Hello Nora

    Just wanted to see how you’re doing.

    Xx

    #1269

    nora
    Participant

    Hi Judy

    Thank you so much for getting in touch

    I am not good. Things just seem to get worse not better
    I now have to go back to work and I am finding it very difficult to compartmentalise

    Cant switch off what so ever all I want to do is go to the hospitla and be with my daughter. I get up go to work go to the hospital go home go to bed

    The fall out from this has been massive and has effected my relationships with other family members in particular my youngest daughter

    I cant switch off I cant watch telly films play music I am just a walking zoombie And I cant look at little girls

    Right now to be truthful I am also sorry for myself as well as my daughter and I feel very cheated

    It is like I have lost my identy my values beliefs ideas have all been swept away

    My daughter is now in rehab Phoenix QA under Mike Homer Ward so is having good care However she has made little progress and I am so worried about the time span she will given

    We contacted Mark Edwards and he said this is very early days but it seems like a life time

    Do you know anything about hyperbaric oxgen therapy. Mike wont recommend it as he said it is not proven but he wont stop us from taking my daughter for the treatment

    Warm Regards

    Julie

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