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Michael - Just some advice needed


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Thanks Sally,

Today my father asked him to squeeze his hand and he made the tiniest movement to squeeze it. He didn't do anymore after this but he looked at is with very wide open eyes Today as if to tell us something.

He is having an MRI in the next couple of days and he may come of ICU next week.

Great day in all, any tiny bit of progress is more then I ever expected

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Hi Michael,

I have felt incredibly moved after reading your thread.

My thoughts are with you and all of your family at such an extremely difficult time. From my experience the brain has the most incredible capacity to repair itself, but we must learn to respect it and take things slowly.

Warmest wishes,

Wem

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Hi Guys,

Been a mixed week so far this week. So my brother has been on antibiotics for his lungs and yesterday it seems to be working as his temp has come down and he was back on the mask for a couple of hours yesterday.

Yesterday we was told has has some blood clots in his legs but not to be alarmed as they are in the lower legs , did anyone else experience blood clots and is it common?

I believe he is really fighting this week as he seems to be trying to keep his eyes fully open and focus on things but the nurse still think he isn't fully awake, I don't know why but I think he is as when we ask him to open them it takes a few seconds then you see the movement.

Something tells me good things will happen over the next week

Edited by m150984
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Good Brother he has, and you also.

Keep talking to him and singing, I wish you and family all the best.

Take care also, have a kip zz zz

My daughter and hubby had a hard time while I was asleep and when I came round and started eating on my own I thought I was in a café and would say to Daughter "My treat Sa, pass my bag up I am paying" lol

Best wishes to you all

WinB143 xx xx

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My SAH was also in the brain stem and I was 'locked in' for a time (I couldn't talk, swallow, move at all). I knew and heard EVERYTHING that went on. I tried to figure out how to communicate, but I couldn't even move so I couldn't gesture either. I was on a feeding tube as well and needed it for about 1 month. I was VERY light sensitive to the point where even a little computer power-light was so awful if it was on at night. Music also sounded weird and not pleasant for the first while, so just be careful about what you provide as diversion as it can also be annoying and your brother wont be able to tell you so my advice is to try a number of things for short periods with long breaks in between. I also cried at everything, but was not sad. When I cried, it was more about poignant things. It just goes to show you that you can't jump to conventional wisdom in some cases.

I am over 2years post hemorrhage and I have a great life now. It is different. I loved it when my loved ones asked me 'what can I do for you today, this moment' because during my recovery things changed so fast that what was helpful one day was not the next. Stay in the present and don't look at what he's lost or speculate on what he's going to gain. No one really knows these answers.

Take care,

~Kris

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Thanks for the advice Kris.

Just had a call from his happy fiancée and today he has moved his hands to command and is blinking on command. I'm so happy as this is the news she needed, she has been so down this week. I had the feeling he was going to do something

I can't wait to get up to the hospital after work now.

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Hi Guys, not been able to get on for a while, just wanted to give you an update.

Next week the hospital have called a family meeting. There hasn't been much promising signs over the last couple of weeks, the moment was minimal and he has not done any movement in front of the doctors still. The hospital want to send my brother to a home rather then rehab which has hit us all hard. We still think he needs more time as he has had many set backs over the last 4 weeks since this happened and only 1 week of being stable.

I have looked online to see what can kick start any movement as this is what we need for him to be accepted into rehab. Tomorrow we have 2 people coming to the hospital to assess him for acupuncture, I saw a documentary on this so wanted to give it a shot before.

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Michael, I really hope when your Brother is assessed tomorrow they can try and kick start some movement again. Your Brother deserves a chance in Rehab....still such early days and as you say he has had many set backs.

Wishing you and your family well. He is very lucky to have a Brother like you fighting his corner. Take care.

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Michael,

I was at home but the lights were not on, so same here "put her in a home" Cheek !!

It's hard but my family said "no we will look after her"

I was incontinent with catheter etc, now I go on my own I wash myself I go out for lunch.

Thank goodness catheter was taken out !! gave me a temperature and infection.

Do not give up on brother, I know it's tiring but he can get better, they gave up on me but my family never.

You have to fight for everything so I wish you good luck and tell them you wont give up on him. xx

Keep talking to him and sing it helps us even though we keep falling asleep.

I remember my Sisters singing to me and my daughter asking me to squeeze her hand for therapy.

Good luck to you, family and brother and never give up on him xx

Love

WinB143 xx xx

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I haven't commented so far I would tell the people coming to see him that a most nursing homes are not suited for brain injuries and that he deserves to be given a chance in rehab

this is what happened to lin I believe that had lin been moved to a neuro rehab unit things may have improved even though it may have been the slightest of improvement

i wanted lin home to look after her but five years down the line i found my health wasn't up to scratch. the home maybe more suitable it depends on his medical needs i know with lin i spend all day with her the home look after her when im not there but i know they do look after lin

i have trodden on a lot of toes to make sure lin is well cared for your brothers fiancée can spend time with him .

my heart goes out to the family this is a very hard time and very hard choices have to be made insist on rehab first just because a dr hasn't seen him move his hand doesn't mean he cant, can someone be there when the dr is present then get him to move whatever he can you haven't said which part of the country you are just wish you well

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Hi Guys,

Just got back from the assessment with the acupuncturist's.They looked through the medical notes and examined him and have told us that the bleed that my brother had was a bad bleed but there is still grey areas of the Brain that can be saved. The have not promised anything but would like to work with my brother. They have worked on people before with my severe bleeds so nothing is impossible.

We haver been rather lucky to find the guy we have as he does Scalp acupuncture, I was only just reading about this last night but its hard to find someone in the UK that performs this type of acupuncture . He has been doing this for 18 years and is also a lecturer in London university teaching acupuncture.

We are willing to give anything a go at the moment so we are going to do 3 sessions a week for 3-4 weeks to see if this brings any reactions or improvements. I have researched this a lot so know what to expect and I know acupuncture doesn't work in all cases. I have been so inspired by the help acupuncture did for Devin Dearth in the film 9000 needles (great documentary if you haven't seen it) the story echo's our own. If we don't the results we hoped for, then at least I can say we gave it a shot.

Thanks for all your support over the recent weeks guys, this means a lot.

Michael

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Acupuncture helped me walk again (100 yards) but after being told I would not walk again.

Well there you go !!

Lets hope it helps your brother and I wish your Brother all the best and I'll be thinking of you All.

Keep strong for Brother all of you.

Keep singing and talking to him it does help.

Best Wishes

WinB143

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Michael. Keep fighting, your brother needs you as his advocate.

So little is truly understood about the brain that I think you have to reach for and believe in the miracle power of the body's ability to repair and heal and hope it will be enough . All of us on here are testament in one way or another to the brains ability to create new pathways where there was little hope but you just don't know what the outcome will be and that's so hard, the waiting and watching.

Sounds like you have found a skilled acupuncturist , I hope it brings some results. Thing is it's pleasurable to have acupuncture so at least you know it won't hurt him. It'll be a nice feeling.

Very Gentle Foot and hand rubs with aromatherapy oils were very comforting in my ICU days both to me and to the family members who did them, ( just check you aren't near any cannulas or bruises and check with team etc ) human touch is often lacking when you are in hospital. I often found tears flowed when I had this done for me.

This is such a hard and painful time for you all, my heart goes out to you, but I believe he will feel your love shining through.

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Listen to Daffs Michael

Daffs your message made me cry, you are amazing pal xx

My hubby said he came to visit me one day and he said I was sitting there all alone crying, he said I looked like a little

girl lost, now all he does is moan because I am on the road to recovery lol

Love to Michael and Daffs xx xx

Edited by Winb143
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Thanks Guys, been to see my brother all day today and watched a film with him. He is getting smaller and smaller but having him with us still is a blessing.

I didn't realise how lucky we have been, the acupuncturist that is going to be working with my brother was a senior acupuncture doctor at a TCM hospital in Nanjing, China, which is the same hospital that treated Devin Dearth.

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Today was the big day when the acupuncturist was coming to do his first session with my brother, at the last moment the hospital pulled out after signing the consent forms on Sunday. They would like to look into things first.

Massive kick in the teeth today and slowly this hospital is breaking mine and my families heart. The nurses are fanstastic but there seems to be something at Consultant level that we have always felt uneasy about from day 1. Questions never get answered and if they do you get so many different answers.

Whilst they are looking into things, tomorrow I am going to ask them to look into what happened during the 7 hours my brother was there the week before this all happened complaining of servere headaches, numbness in the face and blurred vision.

I am trying to be strong but anger seems to be winning at the moment.

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Hi

My husband had a sah (frontal lobe) on 10 april which they clipped and assured us it wouldn't bleed again. Two weeks later he began seizing and they discovered it had bled again. From that point on it was all downhill. His external drain got infected; he had two chest infections; he had a shunt inserted and then taken out because of his chest infection and then reinserted two weeks later. He was in and out of ITC and HDU like a yoyo.

They had to change his seizure meds as they couldn't get his seizures under control. I remember on one occasion they couldn't find any veins left to insert a line. He was like a balloon sometimes with all the fluids. He had a trachea, feeding tube and catheter. He got a dvd in his leg.

He was pulling his tubes out all the time so they had to put the mits on him. On one occasion they reinserted his feeding tube and accidently punctured his lung! The docs couldnt understand why he was not coming round and felt maybe it was the seizure meds holding him under. He was basically out for 4/5 weeks. Looking back at the diary I kept it reads "sleeping, opened eyes briefly today". He lost 2 stone.

In September he went to physical rehab unit and he is now walking unaided. He is now in a brain injury rehab unit to help with his memory problems and last weekend we took him out for the first time in 8 months. His personality, humour and quick wit is all there although there is still some confusion and memory issues. He doesn't remember anything about the last 8 months.

Quite frankly even if there is no further improvement we will all be happy because the old Daniel is still there. My husband loves his sleep and I have a theory that a lot of the time he was not responding as he had zoned out to protect himself. Even his fingernails were badly bruised for months where the nurses had applied pressure as he wasn't responding and on one occasion he told the nurse to "f... off"

Anyway sorry to ramble on but sitting last night in the rehab unit, watching tv with my husband and our son with the two of them joking and having a laugh together is incredible and I certainly didn't think possible a few months ago. One another point, I did find that you have to be very proactive, keep asking questions and ask to see the docs during visiting.

This website has saved me and I hope your brother gets through it. Although its been said a million times they cannot predict the outcome because its the brain so there's always hope. Finally I would like to thank you as you mentioned about acupuncture for your brother and I'm going to look into this for my husband.

Edited by Karen
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