Tagged: [email protected]
May 22, 2019 at 9:13 am #1189
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.
NoraMay 29, 2019 at 8:41 pm #1211Brain Injury is BigParticipant
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.May 30, 2019 at 9:03 am #1218
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.
XxJune 2, 2019 at 5:00 pm #1232FloParticipant
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.
FloJune 9, 2019 at 7:08 am #1242
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
NoraJune 21, 2019 at 10:31 pm #1266
Just wanted to see how you’re doing.
XxJune 23, 2019 at 5:10 pm #1269
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
JulieJanuary 5, 2020 at 10:21 pm #1577GMcParticipant
Please can someone help me with this urgentlyJanuary 21, 2020 at 7:53 am #1611
Hi – Gmc please let me know what help you need. I will check the forum daily.
LynneJanuary 21, 2020 at 9:36 am #1612
I have just seen your post about hyperbaric oxygen therapy. Unfortunately it isn’t a treatment that I know very much about especially concerning brain injury… I am sorry.
Its been a while since we have communicated with you… How is your dear daughter and how are you? This is such a difficult time trying to juggle so many things. Please let me know any update… I will check the forum daily and have a notification by e mail when I get a response.
Please keep in touch and look after yourself.
LynneApril 16, 2020 at 6:38 am #1997
Hope you are well
I am still finding things very difficult to be honest the emotional pain of losing Amber just gets worse and there is very little support if any out there, I just exsist and honestly dont think it will ever change I am broken as a person and feel as though I have lost my personhood and my now best friend is self imposed isolation – Did I mention I lost my mum just months after this happened to Amber
However as to Amber she has been transferred to Bedhampton Nursing Home from the QA due to Covid 19 and I have mixed feelings about this. I recently sent an email to Headway for help and support and all they did was forward it to Amber’s consultant so now I dont know who I can trust this was a private email with conerns so I feel betrayed
Amber is not receiving any OT SL or physio due to the recent outbreak and has been referred to the community so hopefully she will get something when all this calms down
I am going to contact Adult Services and hopefully they will be more helpful than Headway I dont know anything anything
We want to be able to take Amber home. Prior to this she had finished her masters and was working as a trainee lawyer in the Strand for the government so we are wondering if she is entitled to any money in her own right. As her consultant likes to point out we are not paying for her care which at present is being met by Portsmouth CCG we are paying for clothes etc and would like to fund the physio if they are not going to
Amber has a long term partner they have been together since she was 16 he has purchased a house with a drive way to take Amber home but we are being told this is unrealistic due to Amber being fed through a peg and also needing night time care – which is the issue However we are preparted to train and learn what to do. Alos instituitional care has not been great QA often had issues delivering care based on Amber’s complicated needs and also at times she was over dosed on medication which also has happened recently at the nursing home – bear in mind she has only been there since the 8th April
I do not believe there is many places that are suitable for Amber and can manage her care
I am still waiting for the deputyships and my solicitor is waiting for communication from the courts
In her self she has made some limited progress although according to her consultant and most of the literature what we see is what we are going to get
Not sure if she vegative or minimal depends on who you speak with I honestly dont believe there is a clear cut line Amber has global brain damage
She does respond to certain jokes seems to like being out in her hydroflex chair and appears to enjoy being pampered and listening to music and films
I would like to be able to have Amber participate in any trails studies etc as I know this is what she would want too but again have not received any help or encouragement
Thank you for making contact with me
JulieApril 17, 2020 at 8:58 am #1998
I’m sorry to hear you are struggling, though to be honest I think anyone who finds themselves in this situation struggles so you’re not alone in that. It demands an enormous amount of resilience and an acceptance that nothing to do with severe brain injury ever happens fast! The current situation makes it much, much worse of course, and any decisions and plans will be put on hold for a while. With that in mind, I’m not sure how social distancing would affect physio etc. Are you allowed to visit Amber or is that a no no?
Looking further ahead, it may well be that she would be allowed to go home with an appropriate care package in place. I believe that will depend on whether her care is funded by continuing care or social care.
Please continue to take care of yourself and remember you can always call our help line if you want to chat.
Best wishes in these uncertain times
XxxApril 17, 2020 at 9:00 am #1999
Good morning Julie
Thank you for your message and with the update of Amber’s move to Bedhampton Nursing Home. Unfortunately I think most therapy sessions are being stopped at the moment. My son hasn’t had any now for about 4 weeks. (We pay privately for these, in the community, as the CCG’s do not feel they are an essential need!!). I’m hoping it wont be too long before we can start them again. They are an essential part of his care!
Once Lockdown is over you may be able to organise, with permission from the care home, a private therapist to come in and work with Amber? If so, our grant scheme is available and you could apply for £500 to help pay for some of the sessions. See our website in ‘Hep from us’ to access application form.
I fully understand your concerns about Amber being in a Care Home at this concerning, scary time. We had the same worries, even having Stew living at home with us. We reduced all carers down to one live in and my husband and I are assisting.
With regard to your comment re having Amber at home with her complex needs, I cannot see why this should be an issue. Stewart, when he first came home was fed through his tube and he still does occasionally. He also has to have ALL fluids through his tube, which goes through at night. Before Lockdown Stewart had a day time carer (8:00am – 10:00pm ) and waking night time carer (10:00pm – 8:00am) plus an extra carer coming in 3 times a day to help with showering and personal care etc. This is all covered by Surrey CCG’s.
I would certainly be encouraged by the signs you are seeing in Amber’s response to jokes, music and films and of course pampering! We have seen slow but constant progress with Stewart and to be honest I am sure the doctors wouldn’t have believed possible the progress Stewart has made over the 12.5 years since his accident.
Take care and stay safe at this time Julie. Keep in contact.
LynneApril 27, 2020 at 6:40 am #2042
Hope you are well
Thsnk you for your lovely reply
This is such a morale booster
Often I find it so hard to keep going
JulieApril 29, 2020 at 8:04 am #2043
Lovely to hear from you. We are fine thank you, keeping as busy as I can at home! – This is certainly a hard time to be living through isn’t it?
Trusting you, Amber and the rest of your family are well and keeping safe?
Keep in contact Julie – and don’t forget you can always phone Judy on our phone line 01483 770999 should you just want to chat.
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