My mum (68) went into hospital for routine surgery and went into cardiac arrest due to difficult intubation. Her heart stopped beating for 10 minutes. They started CPR (and bagged her) immediately and she had a weak pulse throughout but machine was registering no heart beat. They think she has a hypoxic brain injury as they don’t think enough oxygen was being circulated due to heart and also the fact she had blood in her airways due to difficult intubation. Currently, they have no evidence of this via testing apart from clinical symptom I.E. every time they lower the Propofol she seems to have seizure like activity. My mum had involuntary movements throughout being sedated at times. The only thing that calmed them were midazolam and clonazepam instead. They think it’s a mixture of seizure like activity (as pupils still react to light during these jerks) and myoclonic jerks. Since the introduction of clonazepam - she has been still in sedation for the last week. Therefore, they have always said likely your mum has severe hypoxic brain injury.
This is Day 15 now or her being in an induced coma due to this issue re : Propofol reduction. She is also on two other anti seizure drugs. All test have come back negative.
Day 4 - Bloods (markers for Brain inury) - normal
Day 5 - CT - normal
Day 11 - MRI - normal
On day 13, mum was transferred to Walton. Walton said her MRI was so normal is warranted the risky transfer. The care here is amazing. They have had her on constant EEG monitoring and had her lightly sedated initally. This showed that my mum had seizures we couldn’t see whilst in sedation but also showed she had periods of normal brain activity in between. They said this was a positive. They have increased her sedation now to highest it has been and yesterday said this showed a dramatic reduction in seizures on the EEG. They may well give her brain a chance to rest and try being her round again or they may do a “very deep sedation” that reduces her brain function to minimal (sounded like a jump start) in the hope she comes back again without the seizures.
Otherwise her vitals are good and her pupils are reacting to light and she’s coughing herself even when highly sedated. She’s on about 35% oxy levels on ventilator
Anyone else experience something like this?
Thanks
Cat
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EdinCat83
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How distressing for you. The worst I suffered from intubation last week was a sore throat, so I can only imagine what a shock this has been for you and your family.
Not sure if anyone here can identify with your mum's issues, but I just want to say how her chances of improvement will have soared since her transfer to Walton. Please accept my heartfelt wishes for your mum's safe return and further progress... Do stay in touch.
I wish your Mum and family all the best. What a very stressful time. It does sound like she has improved and she is getting good care.
Talk to her a lot, even if you are sure. Hearing is often the first to come back. Reading aloud is good if you aren't naturally chatty. Voices of our Mum and relatives are the best.
Hi, I had a cardiac arrest due to massive haemorrhage following a uterine rupture when I was 19 weeks pregnant.
I was down for 17 minutes and have been left with a hypoxic brain injury, mainly affecting my speech and right handed motor skills.
This happened exactly a year ago and I’m now back at work full time (but trying to go part time) and I’m driving and pretty much leading a normal life. I realise I’ve got age on my side.
Keep talking - I can remember my husband singing to me!
The Walton Centre is amazing- I was treated at Aintree next door (where I currently work) but I used to work at Walton.
I think I was in a coma for 10-14 days. My CT showed no damage and I never had any seizures. They can’t do an MRI on me because I’ve got metal in my head from surgery to remove a brain tumour (done at Walton!)
I was in ICU for a month because I had to have a tracheostomy because I was fighting the ventilator.
I don’t think so, I can still do my job to the same level as before, maybe a little slower.
One thing I’ve also noticed is mental and physical fatigue. I’m having to have a sleep after work a couple of times a week and one day a weekend where I don’t do anything. This is why I’m trying to go part time.
My then 38 year old son had an out of hospital cardiac arrest & suffered a severe hypoxic injury due to at least 30 mins without oxygen. He was also intubated and in an induced coma for 11 days before his sedation was reduced & he woke up. As it was height of covid we initially weren’t allowed to visit so all information was via tel calls (horrendous position) so don’t know actual medication he was on in those early days. He remained in ICU for 3 weeks before being moved to respiratory ward (had a tracheostomy).
Our son’s severe hypoxic injury brain damage showed on initial CT scan then MRI areas that had been affected. The fact your mums didn’t show any damage must be encouraging. He didn’t respond to any pain and eyes didn’t track anything at all when tested in first couple of weeks. He didn’t have any seizures but limbs showed effects of injury contracted arms & legs. He started tracking people and speaking a few words about the 4th week. If your mum shows any evidence of contractures physios need to be attending to those with range of motion exercises & splints if necessary.
My advice is to keep asking questions to medical team - anything involving the brain is very complex, difficult to really assess extent of damage in the early period - I remember being desperate for answers which Drs couldn’t give.
As already suggested keep holding your mums hands, talking to her, play favourite music -this will help your mum and also yourself.
Thank you Nanapal. How is your son now? Hope his recovery went from strength to strength. Mum is getting physio every day which is good.
Yes all the tests were very encouraging but it seems as thought the downtime has created this seizure issue whilst most of the brain looks normal. It’s all a bit of a head scratcher. She’s now on thiopental. It’s a very potent drug which will send her to the deepest sedation mode and shut down almost all brain activity. The Hope is this with short circuit the seizures when mum wakes up. It’s such a long waiting game. It’s been 16 days of absolute emotion and stress and nobody has answers yet. Trying to keep the faith and hope. I speak to her every day.
Unfortunately our son hasn’t had the best of recovery and is now very disabled. Totally different having an out of hospital cardiac arrest as action to help is significantly delayed. Our son was strong enough to keep holding on and keeps on proving that every day - it will be 4 years in September when our world turned upside down.
Your mum seems to be doing really well and in a good hospital by the sounds. We weren’t so lucky with the hospital our son was taken to in our area - neglect in care so bad we have a legal case ongoing against the trust.
The emotion and stress of the situation is such a rollercoaster time and all consuming. Please make sure you look after yourself as much as you can along side your mum. Time is really what your mum needs at the moment, giving her brain & body a complete rest to reset itself. Then once ready I really hope your mum progresses to a very successful recovery.
Thank you Nanapal. Seems like you have a rollercoaster ride over the last four years. Your son sounds like a strong and brave man.
It’s such a rollercoaster isn’t it. Until mum wakes up, we don’t have any idea how bad of an injury she has. Whilst all scans clear, the seizures are not a good sign and so far have prevented a reduction in sedation. I just hope this new drug thiopental gives her brain the rest it needs to reset and restore balance. Difficult as not come across anyone yet who experienced seizures (with clear scans). Hard to know what to think. All I can do is keep the faith she is strong enough
Hi Cat, I suffered a “brain injury” due to different circumstances.I now take Clonazepam cuz of “panic attacks” and “anxiety”.Clonazepam is actually approved for seizures.It sounds like your mum is getting excellent care.Sending you and your mum love and light.God speed!
Thanks for your reply Furio. Yes mum is on Clonazepam. Unfortunately, nothing has worked yet in controlling her seizures. Therefore, thiopental has now been administered in a hope to restore brain electrical balance. Fingers crossed.
Hi EdinCat, I can’t help you with your questions but we are all here to help and support you on your journey with your mum. What I can say is I have been watching the tv programme I think it’s on Tuesdays and it is called I think A Chance At Life, or something like that, my memory is not good, sorry, but it is filmed at the Walton Centre, and they are amazing, so your mum is in the best place, I was treated at Salford and they saved my life, so I would never disrespect them too, but Walton is next level. Sending you and your mum lots of love and I always say never give up hope, keep coming back to let us know how your mums doing xx
Just a quick update. What a rollercoaster it has been. Mum was given a thiopental infusion about 9 days ago to close the brain down as far as humanely possible in the hope that the reboot would stop the status / seizures. The reboot did stop the status epilepticus but mum was still having seizures on the EEG, although they were more spaced out than previously. Things were looking very bad so they tried Ketamine as a last ditch attempt on Weds. EEG on Friday showed no signs of seizures since Wednesday but it does show both normal and abnormal brain activity. She’s been off all sedatives since Weds 3rd July.
I have been in the meetings with doctors about dignity and end of life as they said they didn’t really have anything else they could do. It was a hard meeting. I pushed for another MRI as I felt a clinical test showing me damage would at least give me more concrete evidence. The doctors also asked a world renowned specialist in epilepsy to look over mums case (which was very appreciated but they did say - likely not much he could add)
Mum had another MRI on Thursday (3 weeks 2 days since CA). Again, this was normal so mums damage is likely cellular/neuronal whilst major brain structures appear normal. I met the epilepsy specialist on Friday. He told me that being in status epilepticus for 3 weeks will have been very tiring for the brain and mum needs complete rest and time to recover. He couldn’t say how bad the damage would be and we needed to assess once she was awake. He didn’t specify timeline, just time and see how we go.
Yesterday mum started to open her eyes. It was very spontaneous and not to command but she opened them. After almost 4 weeks, this was amazing for me although I realise we are nowhere near out of the woods. She has opened her eyes a few times over night but again spontaneously. She is not responding to pain etc at this point. She had also started to bite down on the tube so they have popped a bite stick in her mouth. She was struggling to sync with ventilator as she kept taking her own breaths so they have changed the mode to continuous positive pressure I.E mum is taking the breaths and the ventilator gives her a slight helping hand. She has coughed throughout and is yawning a lot.
I hope she progresses but given everything she’s been through, progress might be slow or worse….I guess I’ll just hang on to time is a healer for now
Hi All. My mum’s eye opening has increased but she remains pretty unresponsive. This is now two weeks tomorrow off sedation. She opens her eyes spontaneously and she definitely opens them to pain. We had some toe movement / twitching over weekend and yesterday but hasn’t moved any limbs. She is not tracking light (I have seen her do it once and so has nurse). I feel like in the week since she has opened her eyes she has made changes in the right direction but obv the medics want to see more.
On Friday they gave me the ball park of 1-2 weeks for improvement or we need to have difficult conversations they took her off sodium valproate on Saturday incase that was stopping her from waking up properly. EEG didn’t show this has made anything worse but EEG still abnormal. She is also still on ventilator although she does the breathing herself, I think the vent just helps expand her lungs. That’s five weeks on ventilator now. Her face is full of expression, she grimaces, yawns, blinks etc
I still think she needs more time. Any advice / words of wisdom? I feel like mum is on a timer clock
Mums stats remain very stable. She has yet to move a limb. However, she shows me little signs each day. Today I asked to raise her eyebrows if the answer was yes. She did this. Three times in row. Early days to say for sure. I need to try this again to ensure consistency in response. Her eyes seem to be moving more (but not tracking yet). Definitely more purposeful and more frequent eye moving. I have a feeling that she is in and out of fleeting moments of more consciousness before she’s gone again. As she definitely recognised me on Tuesday when I walked into the room. Then she was gone again. Very hard
I’m very happy to hear she’s stable I do pray she shows more positive signs.
My nephew unfortunately hasn’t shown any major signs the doctors would be happy with. He has yawned, had tears and slightly flickers his left eye but they are not happy with that they want him to move limbs; for us him showing even these signs is a big improvement as we know he’s still in there. They can not seem to understand where his infection is either which is also quite concerning.
Sending you big hugs and lots of prayers for your mum 🤍
Not everyone is text book. Every brain is different. Someone told me today - you know your mum better than anyone. So if you see something. You see it and it all adds up. Doctors may not call it an improvement but I like to call them changes in the right direction. Not the wrong direction.
Keep talking to her, being tactile, and maybe playing favourite songs.
I thought I'd dreamt of soothing sensations on my hands and arms whilst 'unresponsive', but later learned it had been reality ; my son trying to reach, and reassure, me through massage.
hello. Cat. Thanks for your message and encouragement. Mum was being transferred back from Walton to Bangor next week. Walton said they had stabilised her as much as possible neurologically. Mum was mostly UWS but there were increasing glimpses of MC. Anyway, they had to take off sodium valproate last Saturday incase it was keeping her sedated. On Tuesday, I noticed slight jerking. Weds it was more obvious but EEG showed no evidence of status. Yesterday it was constant. They did an EEG and she’s in status myoclonus. She hasn’t been in status epilepticus for two weeks feel likes it a massive step back. Her consultant seems pretty certain that SV Will do the trick. She was given that last night. Loading dose and now 2mg a day. They lowered sedation this morning and she went straight back into jerks/seizures :(. Hoping that she just needs the SV to reach level it was before. Rollercoaster xx
Hello Nadia. She is still fighting. She came out of her last induced coma on 23/7. She’s opening her eyes and looking around but no tracking. She’s started to move her legs and arms but hard to tell if it’s her or epileptic activity. Her last EEG was improved but still abnormal. But something keeping her from waking up properly. How are things with you? X
Hello all. Just an update on mum after 2.5 months in ICU.
We are back at our local hospital now to give mum time she needs. She is still on vent via trachy (CPAP and on 21% oxy) and has her 5th chest infection which she is really struggling to shake off. She has also had to have a few blood transfusions as her HB has been low.
Neurologically - some small improvements. She is very much eyes open now. She tracks with her right eye - takes awhile for the left eye to do it but gets there in the end. Her eyes move towards voices and objects in the room. The other day I came in and she was looking up at the TV. Nothing to command yet and no obvious signs of awareness. But above is all new (after 4-5 weeks since last sedation hold). Doctor said (not medical opinion but gut feel) - she is processing something at basic level. They have also started to hoist her into a chair for 3 hrs a day - which was so lovely to see and will help with her secretions.
The other day I looked straight in her eyes and asked her to open her mouth if she could hear me. You could see her trying to process and do it corners of mouth moved a bit but she couldn’t quite get there
I remain hopeful but just hope this latest infection won’t take her from me. Her WBC is very high (35). They changed her AB yesterday. She’s keep fighting!
Mum has started to respond to questions with nods and shakes of the head. They took her trachey cuff down today temporarily and asked her to say hello. She did! I couldn’t believe it. It’s not completely consistent yet but her first nod was a week ago and we have seen rapid improvement in that week in terms of frequency. She also smiled/laughed at a story.
Consultants still worried about her physiology as she’s still on a vent (3 months later) but she is weaning fast. She’s currently 14 hours off support.
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