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Michael - Just some advice needed


m150984
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Hi Guys, My older brother had a bleed on the brain 2 weeks ago on 1st November 2013 where he collapsed in a toilet at the gym. After being found and attended to by the ambulance service he was taken to the hospital after an hour where he was unconscious most of this time. We was told later that night by the consultant that the bleed was so severe that they would not be able to operate on my brother and that his chances of survival was very slim as the bleed was in the most dangerous part of the brain, around the Brainstem.

He was on a ventilator and put under anaesthetic to make him comfortable. 4 days past and on the Tuesday he was showing signs of movement in his left toes and moving his fingers on command, This bought a lot of positivity to my family but as the week went on he started boiling up ,developed a chest infection and the responses stopped. The nurses then put him back under anaesthetic and cooled him down with cooling blankets. 10 days after he was admitted to the hospital they lowered the anaesthetic again and on day 11 he has opened his eyes.

At the moment he is just looking around the room not focusing on much and seems to get tired and he has stopped responding to the commands to try and move his feet and squeeze our hands, he has not done this now since he was woken up from his second time on anaesthetic. My brother is very strong and fit, prior to coming to hospital he goes to the gym every day.

A week before his bleed he did take himself to A&E complaining of numbness around the mouth and arms and headaches but was sent home. Does anyone have any advice for his recovery and how we can support him. My fear is that he will be in a locked in state which will be very hard for him to deal with as he is a very active person.

Edited by Tina
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Hi, a very warm welcome to BTG :)

So sorry to read about your brother. Such a worrying and emotional time for you and your family.

It is very early days. The fact that you say he is very strong and fit is a positive.

Have you tried playing his favourite music or reading to him to see if he responds to you?

Mind you, he will be very tired and sleep alot, as the brain needs lots of rest to repair.

Your brother has been through and is going through a major trauma.

Glad you found us, you will find lots of support and helpful information here.

Take care and keep in touch.

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Hi Tina,

Thanks for your reply. Yes I have bought him a CD player and also added some audio books with some of his favourite films but in audio format.

I keep telling myself it's early days and he needs time then when we see some positivity the excitement takes over and I suppose I am expecting to much to soon.

His baby is due in a couple of weeks so that is also playing on my mind. I saw tears running down his cheeks today and I felt useless as he has no idea what's happened and why he is there.

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Hi there. This is such a big deal for all of you, the family , to be dealing with, I imagine emotions are all over the place especially with a baby due any day, all I can suggest to each of you is to try and take each day as it comes as this can't be rushed. Sending my very best wishes that you see some improvements in the coming weeks.

You mention ' locked in' state. I didn't experience this but there is a lady I met through another organisation called Kate Allatt http://kateallatt.com who is very inspiring and has written about her experience after a brain stem stroke and she was locked in. She was incredibly fit, just like your brother, and now actually speaks to medical professionals about dealing with patients better early on and showing less pessimism.

The main thing she maintains is that it important always to be speaking to the person, so address and talk to him as the brother he has always been , maybe read him books that you both liked in your childhood!...and make sure that those providing care talk to him and explain everything they do BEFORE they do anything. I can vouch that when you can't communicate having people 'do' stuff to you is scary. I am sure that you will find a breakthrough to be able to communicate, I pray that you do .

Edited by Daffodil
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Hi there. I am sorry that your brother and family are having to go through this. I know noise of any kind just made everything worse for me. I did not want to talk or listen yet I was too wiped out to concentrate on conversations. I would like to add maybe bring photos for him to see would be helpful.

Good luck and please keep us informed. Maryb

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I understand as much, everyday we have people and friends wanting an update on his situation an the pressure to give them positive news has become annoying, I'm not sure they know how sick he is. I know he needs time to build his strength up and I will be supporting him evey step of the way along with my other siblings. I will keep you all update with his progress and seek advice when I have any questions. It's nice to have people to speak to that have actually lived this situation and I would like to thank you in advance for all your help.

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Hi M

Your brothers story mirrors my own, I collapsed playing sport, I was left over night due to heavy bleed and partner was told I probably not make it through the night.

I was in a coma for three days and spent a week in intensive care and a day in hi dependency and a further three weeks in hospital.

A doctor told me after it that the chest infection I developed was the biggest threat to my life form the actual bleed it self but while very treatable it adds a long time on to the recovery process and takes so much out of you at the time and what you won't see is the physios working on his chest to clear it, the physio used to joke with me after it that he needed a bed after my sessions due to big chest muscles, your brother could be very tired after the treatment too.

While in hospital and during visits I struggled and just wanted to be on my own and the way I done this was to switch off, I struggled to talk, think, listen and move and when family visited it was no different, I just shut down.

I also refused to cooperate with my family asking for small things to do to show them that I could do them, I stated to see these as commands as so many doctors, physios, nurses and other staff were "poking and prodding me" and I couldn't handle it.

Would I be right in thinking his eyes have been opened for three days now with little response if so I was conscious for about seven days and refused to do anything including eating or drinking when I was capable of doing so and still had to be fed by tube.

Some of my first memories were of being very easy agitated, confused, angry and trying to pull out catheters ivs etc, I would also hallucinate and hear things and again I would just go back to sleep to stop them.

The few things that I would have liked not done so much are the demands family put on me to do things like try and move, eat, talk etc, constantly ask how I was feeling, talk to nurses or doctors like I was not there even while semiconscious.

I would also suggest taking some photos of him lying in bed and hooked up to all the machines, it may sound morbid but its one of my partners biggest regrets as when I got better I went into denial and had no understanding of how serious it all was, it could help greatly in the recovery process as it will give him an understanding of just how serious it was and that it will take a long time to recover.

I wish you and your brother all the best.

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Thanks for your response Desy.

Did you not have an operation in the end and where was your bleed? Your case seems very much the same as my brothers, he to is very big. He looks so strong laying in the bed you just expect him to get up at any moment.

The doctors have said the recovery is now up to my brother and how much he can give them. I know he is a fighter and has only just opened his eyes so I would like to give him some time to gather his thoughts, adjust to his surroundings and then get ready to fight the long road ahead, what I don't want is for him to lose faith and give up.

We was going to start to let his close friends come and see him as this may help, but I am not sure how he would feel about them seeing him in this situation now after reading some posts.

Edited by penny
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just take one day at a time please my lin was very much like your brother her bleed was a class 5 plus I went through weeks where nothing seemed to happen but her eyes when she linked up with me I knew she was still with me that was enough for me.

it is very very early days for your brother you are going to have some really heavy roller coaster rides over the next few weeks but as your brother seems to have come through so far we can only hope things will improve for him,

but please be prepared for the odd step back in his recovery contact with him is good holding hands stroking his arm talking and just being there for him is all you can do for now,

please take time for yourself make sure you share the load as well because if you overdo it you will not be able to support him later.

I cant see why his friends cant see him it might be the thing to motivate him to get better the fact they keep asking about him means they think a lot about him it may very well be what he needs take guidance from the nurse's and drs

and also give you a break start a diary that anyone can put something in which hopefully he can read when he is able

but please take one day at a time and look after yourself as well you are just beginning to start a long road we will be here to support you and your brother hugs and cuddles

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I will take your advice on this with me Paul, thank you.

Today has been a positive day, my brother was in a seat today when we went to visit him, although his focus wasn't on us as much it was better then him being stuck in the bed and they are also reducing his ventilation usage so he didn't have any help from the machine while I was there.

About an hour ago, I just received a message from his fiancée to say she thinks she is in labour (will keep you updated). 2 weeks ago I was dreading such news as I didn't expect my brother to be with us.

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Hi, just thought I'd pop in and say hello and welcome to BTG.

I'm sorry to hear that your brother has been through this - so difficult for you all, particularly as his fiancee is due to give birth.

I wish your brother well in his recovery and look forward to hearing news of the new arrival in due course.

Take care,

Sarah

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Hello,

It is difficult not to be deeply moved by this thread. I had a baby 15 months ago, which perhaps goes some way in explaining why I feel a particular high emotion regarding your family's circumstances.

I am happy to hear that the baby has arrived fit and healthy and that your family is able to experience some joy within this very difficult time. The bitter sweet feeling of that joy, is however, not lost on me.

As empty as words can seem at times like this, I am extending my most sincere wishes and hope that each day brings some improvement.

Please extend my love to your sister in law, who finds herself a new mum in circumstances she could not have predicted some weeks ago. She is more than welcome to contact me anytime should she wish to offload in any way.

I shall be keeping a close eye on this thread and keeping you all in my thoughts.

Lynne xx

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Hey Guys,

Sorry I forgot to say they had a little boy, this was his dream as he has 2 little girls already and was dying for a mini him.

The hospital have been great, the Neuro ICU ward and Maternity ward have been in contact and arranged for him to meet him tomorrow.

Thanks for all your kind messages, being on here only a couple of days has already made me think positively. I need to install this into him now :-D

Michael

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Today they wheeled him out to relatives room for about 45mins. His eyes were open and shed a little tear when he met his new son.

I have just been to visit him and still no movement, I tried to communicate today through blinking yes and no answers but not sure I got it right, I also bought a letter board but I supposed I have to master the blinks before attempting this.

Edited by m150984
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Hi Michael,

Hope your brother goes from strength to strength and gets better soon.

When I had my SAH my hubby was told "Your wife will not walk again and have you(Family) thought of putting her in home "

(Cheeky so and so's! ).

I go out and I can walk (not far but getting there with help of family).

I wish all of you lots of luck especially your Brother, now get up hospital and sing to him as that's what my family

done for me.

Good luck to you and your family xx

Regards

WinB143 xx xx

Edited by Tina
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Hi there m150984 !

My sister had a bleed 18 months ago and told me afterwards that she was totally unaware of anything while she was in intensive care. It was like she was in a deep sleep and gradually woke up until things became clearer. I found that she would respond to commands later than asked as it was such a big effort to just open her eyes! Squeezing my hand or blinking happened about 10 minutes after I asked her. One of the nurses told me it's like the worst tiredness you could imagine.

It took nearly 6 weeks for my sister to properly wake up. The brain is repairing all the time!

Please remember to look after yourself as I was in a kind of vacuum and looked back after two months and realised I had lost 2 stone from rushing around! My sister is lying in her bed just now as her brain is repairing a little again and this causes the tiredness! But, she has progressed slowly and is now at the gym 3 times a week to build up her strength. We have also been on holiday abroad.

So keep going and help your brother! Remember about the tiredness in the future and cry when you feel like it! This is a big shock for you as well!

Sally.

Edited by penny
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