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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Stroke Experiences

199 replies

PurplePineapple1 · 12/01/2023 19:00

I'm blatantly posting this here for the traffic.

Husband had a triple heart bypass on Tuesday and suffered multiple strokes immediately after the operation. He has a Glasgow coma score of 12. I cannot seem to get any meaningful information from the hospital. He is mostly unresponsive. Has barely opened his eyes. Did have a good period yesterday of squeezing my hand on command and giving thumbs up. He is constantly holding his head and moaning. They suspect swelling in the brain.

What's going to happen? Why won't he wake up? I have to ring ITU 10 times a day just to get the most basic updates and I just want to know what is going to happen to him. Please help me :(

OP posts:
Nongatron · 15/01/2023 03:44

@PurplePineapple1 more encouraging signs. responding to various forms of stimuli is positive

Thinking of you both and sending the best healing vibes x

SlaveToTheVibe · 15/01/2023 09:02

This is really encouraging OP. Img lad to hear it. Good luck 🙌

ShirleyValentin3 · 15/01/2023 11:25

Sounds like he's making really great progress ! Especially as stroke can sometimes alter the personality. Silly jokes are exactly what you want!

As an aside, when he's out of the woods, you need to push for as much physio as he can have. I signed my dad up to a university exercise trial and he had a 1:1 physio 6 x a week. The other guys in his ward had half of the physio. The difference in recovery between them was off the scale. If you can afford to have private rehabilitation and physio, absolutely do it. The sooner it starts the better.

Best of luck to you all ❤️

Crikeyalmighty · 15/01/2023 11:44

This is all very positive OP- thinking of you

Nongatron · 15/01/2023 21:52

@PurplePineapple1 I hope today has continued to be positive. I hope your dh continues to improve
Take care x

bloodywhitecat · 15/01/2023 22:06

Keeping everything crossed for you both!

hadntbeen · 15/01/2023 22:07

I am thinking of you, your husband and family. Your husbands sounds like such a laugh, even under difficult circumstances, bless him. I hope he pulls through and try not to feel any guilt, he knows you are there as often as possible, he knows you love him and he would want you to look after yourself most of all.

PurplePineapple1 · 16/01/2023 11:06

We had a bad day yesterday, or rather I had a bad day yesterday. He has got through this critical weekend and I am feeling elated about that but seeing him yesterday was really hard. Heartbreaking. He was so frustrated and was in pain and uncomfortable and it was just awful. He made the drink gesture twice but he hasn't been assessed to see if he can swallow yet so all we could do was wet his lips and it just broke my heart.

I've been staying in the town where the hospital is but I have to go home today. Which I feel terrible about. I'll be coming back every day but I won't be able to stay for both visiting sessions. 😕

OP posts:
Nongatron · 16/01/2023 11:18

@PurplePineapple1 it’s great your dh has got through the weekend . But I’m not minimising the toll this has already taken on you both and it will continue to do so.
That might sound doomy but it’s not meant to be it’s just that this really is a marathon
Re his swallow he will need to be assessed to ensure that he doesn’t aspirate fluids into his lungs.
Please please reach out to family and friends who can offer you support. Don’t be afraid to ask people will help even if it’s just a listening ear.
Hopefully his frustration will be channelled soon into physiotherapist which will help him regain strength and skills.
Continuing to send you strength and care xx

Hadjab · 16/01/2023 11:47

@PurplePineapple1 I'm going to be 100% honest here - I know what you're going through, the doctors will tell you to prepare for the worst, which is right, but also don't give up hope, because every case is different.

My husband suffered an aneurysm back in 2014. He collapsed while on a night out with his work colleagues. He was taken to hospital where he was admitted for observation. At 6am, we got a call to say he had taken a turn for the worse, and to come and say goodbye. Three hours later, they opted to transfer him to another hospital with a specialist neurology department, with a plan to operate to clip the bleeding artery. The operation was successful, but within 48 hours, his brain had swollen to the extent of his needing a craniotomy - removal of part of his skull to enable the brain to swell freely until it subsided.

The next 48hrs were touch and go, with the doctors constantly telling us that due to the size of the haemorrhage, it was unlikely he'd pull through, and if he did, he would very likely be left in a vegetative state. at worst, or completely paralysed with cognitive deficiencies, at best. Around two days later, he was responding to external stimuli, such as touch, on the left side of his body. He wouldn't respond to commands from doctors and nurses, such as hand squeezing, only when I told him to! After less than a week, he was transferred to the high dependancy unit, two weeks later he was transferred to a general ward in another hospital whilst we waited for a bed to become available in a physio unit.

I'm not going to pretend everything was rosy; he was left with deficits on his right side, had issues communicating for around six months, and had both long and short term memory loss. He had another two mini strokes when they replaced his skull with a titanium plate six months after his collapse, but he defied the odds, and although not the same man as he was, there were flashes every now again of his humour and personality, and we were grateful to have him back for the four more years he was with us.

Don't give up hope, but also remember to rest - easier said than done, I know, but you have to look after yourself to be able to advocate for him. The night I left him at the hospital for his plate operation, I got home, and literally couldn't move for two days - my body totally shut down on me, very likely because it knew I needed a break, even if it was a forced one.

Assuming you have a strong network, don't be afraid to ask for and accept help from your friends and family. You may think this all on you, but it doesn't need to be.

Sending you all the love and strength in the world - PM me if you want to talk, anytime x

faw2009 · 16/01/2023 13:25

Yes, really is a marathon. It's going to be deeply frustrating for your DH. Also want to say, personality can swing too. My dad got depressed at times at what he couldn't do, so had to be reminded about how far he'd come! I was a nag making him do his physio exercise too.

But the brain can be remarkable in its recovery. Wishing for the best.

PurplePineapple1 · 16/01/2023 18:43

He's come on a bit again today. The physios had him try to sit on the end of the bed and they say that he did need a person on each side of him to support him but that he used his core to try and steady himself the whole time which they say is incredible at this stage. Because of the physio he was knackered when I got allowed in at visiting time so he was asleep most of the time. He did wave to his brother, he did do a particular thing with his thumb, stroking my hand in a way he does when we hold hands. His glasgow coma score is still 12.

We are really waiting for him to be moved now as he is still on cardiac ITU. The consultant who did the bypass has essentially signed him off today and says that the surgery has been a complete success. He's not on oxygen anymore and is maintaining his own blood pressure so is only on the feed and hydration.

OP posts:
Nongatron · 16/01/2023 19:32

@PurplePineapple1 I’m smiling reading your update that’s brilliant news
No wonder he was exhausted but well done that man, moving will have done wonders for him in so many ways.
Great to hear he no longer needs oxygen either
You both are doing fab
Sending happy vibes 😃 x

Icecreamandapplepie · 16/01/2023 23:14

Great news!!

hadntbeen · 16/01/2023 23:53

Oh fantastic, so glad to hear this. What a strong man! Long may it continue and I will continue to keep you both in my thoughts and sending healing and positive vibes Flowers

PurplePineapple1 · 17/01/2023 00:04

Nogatron based on your experience is this good?? Is it progress?

OP posts:
Nongatron · 17/01/2023 02:42

@PurplePineapple1 yes absolutely. Your dh is breathing independently doesn’t need oxygen.
He has sat up on the edge of the bed which is a really big step
His cardiac consultant has signed off on his bypass
He is only receiving fluids and feed so no longer on a vast array of drugs intravenously to sedate him maintain his BP etc
All in all I think he’s doing very well
I hope this helps a bit x

MinnieSmall · 17/01/2023 03:30

My family member had a brain bleed 2 years ago. At one point we thought he would die or be left permanently blind and severely disabled but he made a very good recovery. He was in his 40s at the time so not that old but did have serious health issues. My point is that it's very difficult to tell now in the immediate aftermath how it will go but don't give up hope. Sending you and your husband best wishes and prayers.

StarInTheHeavens · 17/01/2023 03:46

Try to get some rest OP. Recovery from stroke can be long and arduous and you're going to need your energy for the long haul.

PurplePineapple1 · 17/01/2023 20:54

There's no update today. I keep updating this thread more so I can look back on it really.

No change again today. This is the second day in a row that he has slept through all of our visiting time 😔 I wish I could understand this sleepiness and how long it will go on for. I feel frustrated as hell today as I feel like he's sleeping and not doing the things he needs to do to recover. I know that makes me sound awful I just felt that way today. The speech and language therapist came to see him to assess if he could swallow and he wouldn't be roused from sleep so she left 😞

OP posts:
greenspaces4peace · 17/01/2023 21:06

@PurplePineapple1 the sleeping is the brain recovering. so the brain is purposefully resting from all input and activity to try and heal.

this would be reflected in his glascow coma scale.

in my experience as a long retired nurse this can take a few weeks.

Nongatron · 17/01/2023 21:11

@PurplePineapple1 I check in to see how you both are doing
Your dh sleeping is giving his brain the opportunity to work on repairing itself. You can imagine that is very energy intensive work hence the need for a lot of sleep.
The plasticity of the brain is incredible and his brain will be busy with various cells doing things like clearing away dead cells renewing pathways rewiring to give a few examples.
Plus he’s been through a heck of a lot of trauma which he also needs to recover from
Don’t beat yourself up both of you are doing brilliantly.
Sending healing vibes and strength xx

AuntyMabelandPippin · 17/01/2023 21:30

He needs the sleep to recover. It's hard when you can't see any progress. Are you going in at night? Perhaps go in the afternoon, he might be more awake then, or vice versa?

PurplePineapple1 · 17/01/2023 21:41

I get there at 2pm. I'm only allowed to see him from 2pm until 4pm 😪

OP posts:
Munchyseeds2 · 17/01/2023 21:49

In my family experience, it's a long, slow road.
One day at a time