My son suffered a hypoxic brain injury one week ago. He is currently in the hospital receiving life saving care. The doctors don’t know the cause of his injury. His white blood cell count was 38,000 and they think that he suffered a massive seizure. He is 25 and was living alone at the time so they don’t know how long the seizure lasted. He cannot speak and can barely move. He is able 5o communicate by gently squeezing hands for yes and no questions. He has difficulty getting the brain signal correct to open and keep open his eyes at will. The damage in his brain seem to be by the basal ganglia…more specifically the corpus striatum and hippocampus. They are placing a feeding tube in him tomorrow. Tonight he started coughing and had has been having to be suctioned. He never had to be ventilated. My question is has anyone had to deal with pneumonia for their loved one after the brain injury and what was the outcome. Also, has anyone dealt with the inability to speak and how long before it came back or did it never come back? Lastly, I’m having a hard time dealing with my expectations. What are reasonable amount of times to expect in this journey to see improvements.
hypoxia brain injury: My son suffered a hypoxic... - Headway
hypoxia brain injury
Welcome to the group K, sorry to hear about your son. Unfortunately no one will be able to give you a time frame for improvement. This is likely to be a long journey for him and your family, I wish I could say different.
Please feel free to ask anything, we are a friendly bunch of people with lived experience either as survivers or carer's. We as a community will be here for all of you. Please check out the Headway website, they have information that you can download, and there is a helpline available during office hours. Contact details are pinned to this page.
There are carers here that I hope will make themselves known to you. They have been exactly where you are.
I wish you all well for now 🍀
hi I'm so sorry to hear about your son and I really hope he makes a good recovery my husband had a hypoxic brain injury 2years ago he had a cardiac arrest and was down for about 20minutes when he was in hospital he was put on a ventilator they had to insert a peg in his stomach which he still has now
my husband's recovery was very very slow he couldn't talk walk his cognition was very very bad he also damaged his basil gangila and now because of that he has involuntary movement disorder chorea
my husband was sent to rehab after 4weeks of staying in hospital to be honest rehab did not work for him he was there for 6months and honestly he was really bad where he still couldn't walk or talk and was very aggressive he adgitated all the time his short term memory was really bad he could recognise me and the rest of the family he could not write but could read small sentences he was put on alot of medication for his sleep because he didn't sleep all night but when he did he would sleep for a couple of days straight we had a best interest meeting and they wanted to send him to a care home but I argued and brought him home I'm not going to lie it has been a very long and very slow journey every one gave up on him when he came home after a couple of months he started to walk just now his starting to communicate but it's not perfect his speech is very mumbled his not getting any speech because they gave up on him last year no physio and no o.t but he has come a long way and it took him a long time to come to where he is the key is patient hope and never give up because this time will pass to I wish your son the best in his recovery please keep us updated xx
I think I am still in shock. They still don’t know what led to my sons seizure. They are even questioning if the extremely high white blood cell count was sepsis. It went back to normal after being on antibiotics but now that he’s off the antibiotics, it doubled overnight. They placed a peg in him today and ironically, instead of being vegetative with the sedation they gave him, his eyes actually opened and he sort of gave me a wave which is the biggest response I have gotten from him. It’s encouraging to hear that speech can slowly come back. You have been through so much. Thank you for taking the time to encourage me. xx
My partner has hypoxic brain injury from a cardiac arrest 2 years ago. He was in a coma for 6 days and was unable to talk or swallow when he woke up. After a day or two he started quietly rambling gibberish with the occasional proper word thrown in. He started getting daily visits from Speech and Language therapists and after a couple of weeks was able to talk again, although really quietly, and this gradually became more normal over time. He had his feeding tube removed after 3 weeks. He has severe memory problems so is much less talkative than he used to be, but can talk perfectly normally now when he has something to say. He also got pneumonia when he was in intenaive care, from aspirating (inhaling his vomit while unconscious). He was on all sorts of antibiotics and I was told he had a chest infection. I didn't even know it was pneumonia until much later when I read his notes.
A week is very early and I feel for you, the shock and uncertainty (and lack of information) at this stage is so very scary. It's a desperate time but you need to adjust to some long timescales. Progress can be painfully slow but please know it can, and often does, get much better in time.
thank you for sharing your story. I find myself trying to look up everything I can in the internet about hypoxic brain injuries and getting discouraged. It’s encouraging that I hear others stories about proof that a degree of recovery is possible.
Hi,sorry to hear what he is going through.My husband had a cardiac arrest at work 6 years ago.He was working in a building on his own,so unsure how long before he was found.He has hypoxic brain injury.He was in a coma for 3 weeks.Unable to communicate when he woke. Tracheostomy ,feeding tube etc.Spent 6 months in hospital.6 years later,he is at home with me.He is mobile but has cognitive issues.It has been hard and everyone is different.Good and bad days.Luckily he still has a sense of humour and only has the odd bit of bad temper.I wish your son well and keep your spirits up.Sending you love and strength.Look after yourself(your son is in the best place to get the help he needs).
Thank you for your encouragement. Was your husband able to talk right away when he came out of the coma?
No,he couldn't talk at all when he came out of the coma..It was a couple of months,then he didn't make sense at all.all.He had no memory of who we were..I spent every day in rehab with him,showing him photos of family etc.He said the odd word,but most of the time I had to try and decipher what he meant(still do sometimes).His speech isn't too clear sometimes and he struggles explaining too.I worked with learning disabled adults before his bi and daughter is a speech therapist too which helps..However he now cannot read or write but loves his music(he remembers bands etc).He was in a wheelchair to start off with,but now walks with a helping hand.
you give me so much hope. I find myself reading everyone’s stories over and over again to get me by. The doctors at the hospital are starting to talk about rehab facilities. A couple of them have a wait list so I’m keeping my fingers crossed that we can get him into one. At the hospital my husband and I are splitting the time with him in 12 hours shifts. I’m not sure how much longer we can keep up the schedule. How did you do your schedule when he was in rehab?
I drove 50 Miles each way to hospital and back every day(unless he was having scans etc).My daughter took 3 weeks off work to help me,but looking back I don't know how I did it.it.I essentially gave up work the day of his cardiac arrest.I wouldnt have been able to function at work as had a very demanding job working with learning disabled adults.Once he woke from his coma and was moved to a respiratory ward,I spent most of the day with him(very understaffed ward).Spent 3 weeks there and I washed him etc and changed his pad as nurses didn't have time..Luckily he was moved to a rehab unit in same hospital where they did a fantastic job with him..The staff nurse admitted she didn't think they would be able to do much with him when she first saw him,but 5 months later he returned home.
My husband and I are doing the same things and helping the nursing staff as well. My husband took a leave of absence from work to help with our son. You are inspirational in that you basically did it all yourself. I had a good day today. My son has started communicating with the occasional nod of the head
That is really good.My husband ,when he woke from coma,basically just lay,waving his arms and legs about.It wasn't until he was on the rehab ward,that he started to take notice of his surroundings.He didn't recognise me as his wife,but as he became more aware,he realised I must be,because I was there every day nagging him! Odd thing was when he did start to speak,it was with a foreign accent.Your son is young,so has that on his side..Think my husband only pulled through because he was very fit(age 54,but cycled 100 miles.for fun)
Hi Kbradley,Sorry to hear about your son. You're in the right place over here. Many an anxious night/day/hour have I popped on here to ask a question or just to feel supported in the fact that our family were not alone. That others have been through something similar or completely different but just as raw and confusing. It was heartening to hear and know that there is hope, though it comes in different forms for all of us.
My husband collapsed December 2020. Reasons not quite known(we have some big theories on this) but he went into respiratory distress. I think he was out for at least half an hour, possibly more before I got home and started compressions another half hour later the paramedics got his pulse stable enough to blue light him to hospital.
It's a long and horrible story, he has a hypoxic brain injury with significant damage to all sectors of the brain, specifically to his basal ganglia.
He had aspiration pneumonia twice. He also had significant clots in his lungs which were picked up by us over Skype due to coughing episodes. This is also how the picked up on the 2nd bout of pneumonia.
What I would say is that we were told to sort of just let him go after about 2 weeks due to issues with his breathing and his inability to keep a tube in.
We were also told that he would be left in a bed in our living room staring at the ceiling unable to communicate or anything if we didn't accept their diagnosis. Possibly the most awful thing you could say to a family who has not even been able to go in and see their loved one.
Quite a long story with lots of ups and downs. 4 months in rehab, awful discharge. But he's been home for 2 years. He unfortunately doesn't have any speech at the moment as it sort of disappeared but he says the odd sentence and uses a speech device. He has a giant list of what we would have called issues. He has parkinsonism (in that he has the symptoms). The list is long.
But what they kept saying to me was that he is young and therefore has a good chance of some good recovery...he's 48, your son is half his age.
There is another thing which they used to say which would irritate me, but now makes me feel positive.
"He's still making Small Gains"
I hated those words. But yesterday we had the Parkinson's nurse around, husband downstairs, he had showered, brushed his teeth, put cologne on, dressed himself, walked downstairs and used his new off-road roller walking frame (because he is image concious and doesn't want to be seen with a granny walker). Sat himself down after walking across a rug which the old rehab team would have insisted we get rid of, and was happily petting the dog, tired but ready for his appointment and waiting for some breakfast. The appointment lasted 2 hours which is would not have been able to tolerate a year ago. And he got to be part of like a normal person.
All of this was through those Small Gains.
So though what you have going on is real and raw your son is still at the beginning of his journey he will still have his big gains to make that will hopefully get you through this time of uncertainty.
The headway nurses have been excellent in helping us figure things out and make certain decisions. They would possibly be good to have a talk to and help you to understand where your son is in his recovery.
You may not need to manage your expectations at all. Like Boots said, everyone is different. But if you asked me what my expectations were during that first few weeks, I would not have expected very much at all based on what was going on. I was wrong. Those expectations are ever shifting. One thing at a time, just for today, it's a bit of a mantra. I would possibly also say we were a thorn in their side during his stay in hospital and then rehab. We continue to be thorn like. But if we were not I don't think he would be here.
So feel free to be a thorn.
It’s good to know that your husband has been able to recover from pneumonia several times now. From what I’ve been reading, many with hypoxic brain injuries have memory issues and can’t store new memories. So with every few minutes, not recalling what they just did, does this get depressing for them. I guess I am wondering if they go through a period of understanding what they had and then being devastated by what they lost?
This is some sort of miracle correspondence from my because I'm never as swift😂. My husband's memory is excellent. He can remember things from when he was little. Things that happened last week. He has only slipped up a couple of times. He sometimes forgets little things like when I've told him the night before that he has an appointment the following morning. He also retains information really well.
Suppose it's got to be on a case by case basis. But from our experience it's not really a thing. He is in a good humour more often than not.
That’s very inspirational and gives me some hope to cling into. What kind of speech device does he use?
He has one from a company called Smartbox. It is an amazing bit of kit. It took us a bit of time to get. We were initially given an iPad. But a friend who is an AAC user (also there is a Facebook group for those using AAC) has suggested an app for him to use on his phone which just had better scope for communication.We had a chat with the speech therapist and she wanted to know what my husband really wanted out of a device. And came up with the Smartbox media pad I think it's called. It can be used with eye scanning as well for those who don't have the use of their hands. It's connected to his phone so that he can use WhatsApp through the interface. This has made a huge difference to his ability to communicate with those outside of our home. He can also use Facebook etc etc through it. It's basically a mobile computer. We have only just scratched the surface of its use. But mainly he can use it and effectively. Which is the most important as it's very customisable.
hi I’m so sorry to hear about your son .. I have found being in this site has helps me more than any Dr .. people who actually know what your feeling /having to deal with .. I’m here for very different reasons to you so can’t find words to help you understand but others will help you understand As they have been in a similar place to you .
Welcome to the group and people who very much care .. sue x
tough times!! Dad had his first heat attack, did CPR but not the kiss of life?!! Was in intensive care for a week before he came round. Took a few months before he made since. Very tough on mum, spent a month with me in I.C.U . Good days &bad ahead is all I recall. Please know hopefully u will find something to support u just now, we are all thinking of u!!! Good luck to u all
thank you for the encouragement
Hi K, I suffered a hypoxic brain injury after cardiac arrest in 2018. They put me in a coma to stabilise me. I was down for 15 minutes. I woke in a cardiac ward in St Thomas’ Hospital, London, and, due to the presence of beautiful nurses and gothic spires poking through cloud tops outside, I thought I was in Heaven. I suffered hallucinations, mainly of baby animals and, according to the doctors, I was delusional (I would dispute that personally; I have my doubts about some ICU nurses). My wife of 32 years said I was effin nuts and refused to accept me home unless I was fixed. I underwent a triple bypass operation and left hospital six days later. I was not offered rehab and my wife who was not a trained nurse was left unsupported. My swallowing difficulties resolved over time and my aphasia has greatly improved. I have been left with mobility problems and my brain is shrunken but, as I have never seen a neurologist, I don’t know the long term effects. My marriage has fallen apart and is close to divorce. I had an after death experience and was told I was being returned for repair rather than being wiped and reborn in another body. I don’t know why they sent me back and I don’t know if I came back to the correct version of our planet. I don’t know why I survived when 92% do not. What makes me special?! Survivor guilt is a problem. I often think about suicide. Life isn’t a lot of fun though I appreciate how “fortunate” I was to survive. The NHS has pretty much abandoned me though so don’t be afraid to make a nuisance of yourself. As soon as you are able, apply for PIP and Carers Allowance. That will help with any money worries. Above all, be patient and prepared to adapt. The patient cannot but you, the carer, must. Good luck and we are here if you need further advice.
HI Skulls, please talk to someone at Headway about the suicidal thoughts - please get help.I see there is also a suicide prevention line in the UK , the website is here:
spuk.org.uk/national-suicid...
Do look after yourself, OK?
Leaf
Thank you for sharing your story. Did you have complete aphasia and if so, how long before you started making verbal sounds?
Hi K
My best mate had a TBI at age 22 male. Few days after coma was able to squeeze hands. Following this able to squeeze at letters to make words. Following this speech therapy. Started to use voice again had some slight damage due to tubes. He then started to relearn wording and now 7 years later has some mild memory loss but is able to converse normally sometimes he finds it takes a bit longer to find the words etc but chats away.
Managing expectations is one of the most frustrating things in a world where no one seems to be able to give you a straight answer. I think strength, hope and patience are the 3 things to hold on to at the moment. I’m sorry you’re going through this, I wish you strength.
A
Sorry to hear your bad news.
Following major OHS almost 3 years ago, I suffered a stroke resulting in Hypoxic brain injury.
I was placed in a coma and endured a pretty rough few weeks where survival was not guaranteed. All told, I spent 6 weeks in a coma or in a world in which I was clearly not part of.
When I woke up, I could only turn my head with no ability to talk or walk - with all fluid goop, fluids and medication being injected via a GN feed. I was kept in hospital for a further 6 or 7 weeks as Stroke Physio & S.A.L.T. Got me able to get out of bed and use toilet, whilst able to drink from a glass and enjoy some very less than solid food.
Once home, it has been a long road in recovery. I still have to depend on an electric wheelchair for some mobility when I’m not able to walk very much. My eye sight has taken a hit, my balance has taken a hit so I cannot be relied upon to kept standing let alone leave the home unattended or without a rambling pole to help with balance. Needless to say, my driving licence has been revoked.
I’m now waiting for a chance to see a neurologist - so that won’t be any time soon. My memory and cognition working or not according to how my brain feels or how fatigued I am.
Typing this response will be the main activity for the day. I wish you all the best at your end in terms of recovery etc. The thing to remember, as others are saying - each case is unique to the sufferer. Our symptoms are unique to us, our means of recovery will be unique as will the level of recovery and how close to ‘normal’ that will be.
I am so appreciative that you took the time to respond to my post. Your story gives me so much perspective and comfort. You have been through so much and still took the time to help me. Keep up your resilience and I hope to post an update in the next coming weeks. Thank you again.
Hi, I get what you are saying. I have been there and done it. It doesn't help you and worse it destroys the people u love. Research shows that the big S is many times more likely to effect the people who know you. Get support from a help line ... shoud scream and tell them it is all shit because sometimes it is... 5 years on I have bastard hard days & I won't ever be normal. But I have found new places to work and new things to do. Stay strong and get professional support immediately. Godd luck, Ian
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