Hello everyone. I am new to this but have joined after speaking to someone at headway on the helpline.
5 weeks ago, my 26 year old partner had a sudden cardiac arrest. He was out running-he is a healthy and fit man and they don't know what caused it but suspect something hereditary.
Luckily, 2 other joggers saw this and were able to rush over. The ambulance was rapid and only took 7 minutes to arrive so we don't think he went without oxygen for over 10ish minutes.
He has suffered a hypoxic brain injury as a result. He was heavily sedated for the first 2 weeks but is now on a high dependency unit awaiting a neuro-rehab bed. He is still currently in a coma but has recently crept on the Glasgow coma scale to 9 and we have seen some very small progress, in his movements, noises and eye focusing. He is having on-going assessments by an OT and is scoring 3's in their assessments but is sometimes able to mirror a smile and they sat him in a chair recently. The neuro consultant has said that we still need to see purposeful movement however and see if he can respond to commands. Can this sometimes take a lot of time? Is there a time limit to when someone might be able to do it even?
Some doctors and nurses do not seem the most positive whilst others tell us he's young and that no one knows what the outcome will be for him and that he is strong and heathy. Obviously, at such a young age, we hope for a relatively full one. He's recently had a few funny days where he has become really agitated and his heart rate has become dangerously high so that have had to use lorazepam to try and settle him as they don't want to risk another cardiac arrest. Additionally, he is covered in bruises and scratches from tharashing around and even looks like he wants to get out of the bed. He appears to have settled more again recently though fingers crossed.
I think I am just hoping for some words of comfort or support or even hope from people who know how it feels. I do not feel like I cope well and haven't been able to return to the house we share, staying at my mums and wearing her clothes also! I know it's a long journey but I just hope there is more for him and that he can recover as I'm sure all families/friends/partners do. It's terrifying and it feels impossible to make sense of any of it.
Thank you all. N
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Nmen22
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Hi and welcome. Sorry you have to be here, but it is the most supporting place you could be during this dreadful time. The brain is a very complex thing and it takes a long time for it to settle after an injury. 5 weeks is nothing - I am afraid it will be many months before you begin to see how things will be as he recovers. Many of our families here have kept a diary, right from the beginning, of how things are, what is said, who they speak to, etc which they have found enormously useful and looking back it helps you to see what improvements are being made. Do talk to him, play him music, etc and when he recognises a bit more of what's going on you can show him photos, talk about things that you have shared.
Don't give up hope, many people here have had the most dreadful things happen but they have recovered. He may never recover fully to how he was before, but hopefully he will be able to have some degree of normality in his life. Just take it slowly, celebrate each improvement and, most importantly, look after yourself too. You need all your strength for the months to come.
Thank you so much for your reply. I have taken some real comfort in your words so thank you for that.
I think I feel that sometimes, the doctors don't see beyond the next few weeks and I have to remind myself that he has at least 6 months minimum to give us an indication (as it's a hypoxic injury).
It's can feel hard at times as not being able to help him or take away some of his pain and discomfort can be heartbreaking.
But like you say, I will not give up hope!
I feel that I have found a really comforting place on here and it feels very refreshing to have joined it and speak amongst people who understand. It can all feel a little isolating at times.
Thank you again for your message of support and kind words. N
When the doctors are talking to you, remember that they don't often see the final results of brain injuries. They treat someone in hospital, discharge them and someone else takes over (or doesn't as son often seems to happen). They don't know the wonderful stories we hear on this site of those who have survived the most awful injuries and made good recoveries.
Take care, rest as much as you can to keep up your strength.
Hello N and welcome. Probably the first rule of brain injury is that, in most cases, not even the specialists can forsee the outcome, or the time frame between now and optimum progress. And certainly, 5 weeks is very, very early days where a healing brain is concerned but, whenever you're with your boyfriend, try to take comfort from the fact that, although you're not seeing significant progress, his brain is continuously working to repair itself, even as you sit beside him.
Only through rest and the passage of many months will he return to you, and there will probably be times when your patience is tested to its limits. But throughout the past 4 years here, I've met many, many people with serious brain injuries who've survived and come here to talk about it.
Please stay around and keep up updated on your boyfriend's progress ; we're always here if you need to talk. All best wishes, Cat xx
Thank you so much for your lovely reply. You have provided some very wise words that I enjoyed to read and I especially like how you say his brain is constantly trying to heal itself. There is some comfort in that.
Thank you again for your message of support. I am really glad I have found this forum to talk to as it's all quite scary at times and talking amongst people who understand has felt refreshing today. The doctors and nurses do not seem to have the time to talk things over throughly (I understand the NHS is understaffed and under resourced) but even if they do it all feels quite doom and gloom. But I appreciate they are, on some level, trying to manage our expectations.
I will certainly keep you updated with his progress and fingers crossed, will be able to provide good and positive news.
n first of all do you know if hes had blood tests for thick/ sticky blood this could give the drs a chance to dismiss hughes aps.
ive got weakness down my left side and its numb, when i asked how long id have the numbness for, the reply came back.....how long is a piece of string.
unfortunately my friend if you look at it that way, you wont be disappointed.
you may notice a change in his personality, aggression mood swings, noise intollerance.
good luck to booth of you
remember youre part of a family, so you dont have to do this on your own
The same thing happened to my husband 7 weeks ago. He still has reduced consciousness but is very alert looking around now and has said a few words. His body is getting stronger too. It is very hard for everyone but I am telling myself as long as things are slowly improving week by week then there is no reason to think that won't keep happening. I hope you find the strength you need xx
hhodg if your positive your husband will feel that. sorry, ive just realised the people ive been speaking to , i dont know if their relatives are at home or still in hospital?
Hi, thank you for your reply and words of encouragement.
We are going to try the perfume thing and I have asked my mum to get both mine and his favourite smells from home.
We have put some pictures up in his room yesterday and he appears to be looking at them-although I guess it is difficult to know what he is taking in but we keep going a day at a time.
Thank you for your kind words and message of support.
I do know how you feel. My son suffered a cardiac arrest (age 18) he had just taken his A levels, left school and about to go on a gap year prior to going to Southampton university. Nearly 2 years on he has made steady progress but still suffers from cognitive and memory issues.
In those early days in hospital it all looked very bleak. He was in a medically induced coma for 12 days and once that was stopped he was very distressed and shaking for about a week. After that he had to learn to walk again and after 3 months in hospital went to a brain injury rehab centre for a further 6 months. We were heartbroken and it's been a long and tough struggle but do not give up - it's been so difficult but hang in there and look after yourself. My thoughts are with you and keep positive. The brain is amazing but it takes time and he has youth on his side. Lots of hugs. Xxxxx
Hi, thank you for your kind message and words of support!
I am so sorry to hear you had to go through a similar experience but I hope your son continues on his path of recovery and it sounds like he is doing very well and is a fighter.
Thank you again for taking the time to reply. I really feel for my partners parents, no one should have to witness a young child going through this.
Thank you for your message of hope though and reassurance. It is good to know that people can come through it, even though the path is long, difficult and I imagine tiring for all parties involved.
Thank you again and continue to keep looking after each other. I can only keep hoping and not give up.
Hi, I'm a TBI, 2 week coma bloke. Tough for you to cope with your boyfriend's injury, but at his age I'm confident he'll handle it. Key point is his injury cannot 'heal' itself. The part of his brain that was damaged has to reconstruct itself which can take some time. Took my brain 2 years to redesign itself. Good luck xx
Hi N, sorry its taken time to write. I just wanted to say to stay strong and take each day as it comes. A similar thing happened to my husband nearly 3 years ago and we have gone from being told 'there is little hope he's going to ever come out of this coma' to where we are today - he drives, he works and he looks after our daughter. Don't get me wrong - it takes a lot of organising on my part for things to run smoothly (memory prompts, reminders etc) and he's quite a different man (character, lack of emotions etc) but we have certainly come further than I ever expected. I definitely agree with whoever mentioned that the staff in the hospital rarely see how people recover eventually - they just see people at the beginning of what is normally a very long journey. I have found great support from Headway and this group so I hope you do too :-), Take care and keep us posted xxx
Thank you for your kind reply and your words of comfort, hope and support!
We found out this week that my partner has been having something called storming episodes (when his heart rate goes high etc) and they have said it's a stage that can happen, we just have to hope he gets through it.
He is making lots of noises and wriggling around the bed quite a lot. We have managed to reduce some of his bruises with pillows and padding the bed out etc. He is also focusing a lot more when he can.
How did the recovery start for your husband if you don't mind me asking? It's hard to see a point of when it gets better as opposed to how it is now! If that makes sense. I know everyone's journey is different and we are still in the early days etc but it's difficult being patient sometimes and not freaking out more!
Thank you for your reply and I am so pleased to hear of your husbands recovery, it sounds like you are all doing an amazing job
Its weird trying to remember back to his time in hospital - every day seemed to last forever and have very little progress but then seeing the bigger picture I'd say the main recovery was his 6 weeks in hospital on a cardiac ward after he'd been moved from critical care. The last 4 of these weeks were waiting for a bed at a specialised neuro rehab place but I can honestly say that by the time a bed became available - the amazing OT in the hospital had done such a good job that the neuro rehab was very short (which is very unusual). My husband says he had a "wake up moment" - which was about 4 weeks in I think. He remembers nothing of critical care and the first week or so on the ward but then he says he went to the bathroom on his own one morning (he was being specialised so had had someone with him for everything up till then - he somehow just got up on his own that morning) and wondered what on earth he was doing! I'd had many conversations with him up to this point when he'd given some sensible answers and some not so sensible - but he always says that it was like he just "woke up" that day. I'd say that although this was a turning point - it definitely took months (at least 6) to get back into a more "normal" (well the new normal) way of life. In fact - I'll be totally honest and say it took me longer to get back to work than him (I had to have treatment for PTSD as the cardiac arrest happened whilst we were both asleep).
Anyway - like you say - every journey is different but don't give up hope and make the most of every available bit of support that is offered for both of you. Its draining sitting by the side of the bed trying to be positive etc - I set up a bit of a timetable for people who wanted to visit so they were spread out etc and anyone that offered to cook etc - once I could face eating - I took up their offers.
Do keep us posted and do ask any questions that spring to mind xxx
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