I'm fairly new to the forum but wanted to reach out to see if anyone may have had any similar experiences. My mother in law suffered a hypoxic brain injury whilst in hospital late feb and hasn't really regained any meaningful recovery yet. She had only been admitted around 24 hours earlier for unknown breathing difficulties, moved to ICU & put on a ventilator. She woke up the next day and spoke to us on the phone then released to a general ward where a few hours later we got a call she had gone into cardiac arrest and no one knows why.
The outlook from the medical team is very pessimistic saying there's almost no chance of any recovery. She's currently on a respiratory ward with a trachy but the hospital doesn't have a neurology ward and they say it's too risky to move her / no point in moving her to a specialist unit. They've said she's in a persistent vegetative state / minimally conscious.
We've tried looking into getting private neurologists to review her or get a SMART assessment but not had any luck in finding anyone that can come to the hospital. We feel like we're starting to hit a brick wall in terms of how much more we can ask for / look into for her.
The hospital are suggesting palliative / end of life care but that's very hard to process. My husband is an only child of a single parent so is utterly heartbroken. But we also know she wouldn't want to live this way.
She opens her eyes a bit more some days, but there's no movement or any communication yet. She breathes on her own, just room air but requires suctioning. She has a NG tube, they discussed a PEG tube with us but said they didn't think she'd survive the operation (although she's been stable since that first cardiac arrest)
As this all happened very suddenly and unexpectedly it's been really hard to process and we are trying any and all avenues we can to fight for her to make sure we have explored everything we can.
We found the Headway helpline a few weeks ago and they have been an amazing supporting us. So thankful we found that as we felt like we were going mad just us 2 trying to navigate all of this.
Would be grateful to hear if anyone else has gone through anything similar or any help!
Thank you.
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KitKat-10
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Hello Kitkat, my 38 year year old son had a severe cardiac arrest Sep 20 resulting in hypoxia brain injury. Whilst he was in ICU we were given the worst possible prognosis following CT scans & MRI. Consultant said he would be bed ridden, never speak always have trachy, need PEG feeding - palliative end of life never discussed with us. Our son had trachy removed around 7 weeks and began speaking and then started on a soft & moist diet (small amount he would have) plus PEG inserted and fed overnight. Our son has very bad spasticity in all four limbs , he wears leg splints to straighten the contractures & is double incontinent. With excellent care from physios they have managed to get him seated in a wheelchair in last few weeks (only possible then as pressure sore took until then to heal). He has had set backs in his rehabilitation programme unfortunately due to lack of care whilst in acute hospital - grade 3 pressure sore & subsequent Sepsis infection. He has battled through all of this but his speech has faltered due to side affects of Gabapentin medication - this is being gradually reduced and we have heard some speech again. He does recognise us his parents and also his son, family & friends when shown photos and can name them.
He is being discharged from rehabilitation hospital in 3 weeks time and we are currently looking at nursing placement for him as unable to return home due to his complex needs.
This may all sound very disheartening to read but our son is still with us can smile, laugh appropriately & speak (when not too fatigued ) can answer correctly to questions yes/no , say I love you, bye. We hope the sentences he was speaking will return in time. Bottom line is there is always hope for improvement, Drs do give the worst possible prognosis (not that we knew that at the time). As you have probably already been told every brain injury is different and outcomes also differ widely. I hope our experience helps in some small way. The sadness, stress, lack of knowing what the future holds can be overwhelming but this site can be a source of help & comfort - at least that’s what I have found. Take care Nanapal. x
Damn these hospitals to hell some days!!!! Honestly this has me reliving a few things while my husband sits at home in a pair of very loud socks watching a movie in his chair. I don't know whether you will be able to have a look at some of my past posts. But you fight for them to continue active care. None of this palleative NONSENSE. Some hospitals seem quite happy to say let's draw a line under this and others seem to have the opposite reaction. Time time time. We were given a week about 6 hours of them "trying" before they suggested we let go. I mean honestly what the actual hell. I'm sorry,. So angry for you. The fact that they have no neurologist etc sounds like this hospital is Ill prepared for this sort of a situation. Moved onto a general ward? Have they put her back into HDU?
Hello KitKat-10 I hope the above replies helps give hope and glad you have found Headway.I hope you and your husband stay strong for each other best you can at this difficult time. Dont be afraid to challenge hospital.
Hi,my husband was a fit,healthy 54 year old when he had cardiac arrest 4 years ago,resulting in hypoxic brain injury.3 weeks in ICU in coma.Numerous brain scans ,said similar things re no brain activity.Prognosis so bad I was planning his funeral in my head.Spent a month on respiratory ward.Awake but with tracheostomy and not with us.Flailing limbs.I honestly thought that was as good as it got.Moved to rehab ward.Peg feed,in wheelchair too.Staff amazing and eventually after 5 months,walking,talking,tracheostomy removed and peg feed too.No memory of before but home with me now giving him 24/7 care.Good luck and hope you get the help you need.x
Thank you for your replies. Apologies I haven't been on here for a little while to reply, it's been a bit of a rollercoaster few weeks.
A good few weeks ago, maybe a month now, we pushed and pushed for referrals to be made to neuro rehab units (even though the consultant emphatically told us there's no point and no one will take her) then a week or so later we heard she did get accepted for an assessment at a neuro rehab ward in another hospital! As you can imagine, we were totally shocked by this as we've been told since day 1 no one will take her in this condition and there's no point in asking.
It's actually the lovely lady we speak to from Headway who helped guide us into pushing for it as it's a relatively easy process for them to do!
So that was on around a Thurs or Friday and to be honest, I was really angry because how dare they tell us that it would for sure be a "No" so long without even trying! I was gearing up for a very stern call or meeting with the consultant but unfortunately the Tuesday after we got that news, mum took a turn for the worse and we were told she only had hours left.
She is still with us fighting nearly 3 weeks on now but her C02 blood levels are beyond dangerously high so they've said there's not much more that can be done. They think she might have had a stroke or bleed on the brain that day which she's not recovering from.
We are with her everyday, making sure she's comfortable and doing the best we can with what time we have. It's just so heartbreaking to be in this situation.
I was like; you go girl you've spoken to Headway followed advice you've challenge hospital on treatment then my chest sunk, felt heavy reading last paragraph. You have and continue to do in your utmost to ensure shes receiving best care whilst under your observations. You and your husband stay strong for each other, it's so important, your both doing everything in your means.. although virtual we are here for you.x
Hi KitKat, I am sorry about what happen to your mom.
My mom has very similar situation happen to April 10'2021. the doctor start to give insulin to my mom, without clear instruction, and what to expect. my mom has severe hypoglycemia my heart is broken, and blaming my self....
she is breathing on her own, and has feeding tube, open her eyes sometime, not able to recognize us. and she has BAD bed sore, I noticed at very beginning at stage 1 on early June... now she has 2 detribrient done, and going to 3rd one ( stage 4). I beg and ask the nurse to turn her side to side...
Hi, I am so sorry to hear about your mum, that's very good your mum is breathing on her own. She is strong and she knows you are with her. I can understand the guilt, I blame myself too but ultimately it comes down mistakes made by the hospital. We tried to talk to my mum as much as possible and play songs and tell her about life outside of the hospital everyday, even if it was just on the phone due to restrictions. It is heartbreaking when someone can not talk back. They can always hear you no matter what the doctors say.
Don't be afraid to keep calling the hospital and speaking to the nurses. We called all the time, got to know the nurses then they'd tell us what we wanted to know. They are there to take care of your mum and also you. I hope there is someone in the hospital that does care and you can trust and ask questions from.
The UK Headway helpline really helped us, they were an amazing support. If you can call or email them hopefully they could give you some help and support?
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Hypoxic Brain Injury
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Hypoxic Brain Injury - Please help
Hypoxic brain injury
