Mum suffered Brain Hypoxia 4 days ago. I feel So Lost And Confused

[GrahamJackson]

Hi and thank you for taking the time to read this, everything is such a mess right now and i just need to talk to someone who hopefully knows what i am going through and offer some words or support and advice, its only been 4 days but my mums story is already pretty long so i hope you bear with me.

Last Thursday about 6:30pm , my mum (aged 64) went into sudden cardiac arrest. Luckily i was with her at the time as i am already her full time carer, what i saw i still cant talk about or even put down in words but i can say that i gave her CPR until the paramedics arrived. The estimate is that her brain was without oxygen for 6-10 mins , so they are going with 10.

After they brought her back with 1 shock to the chest, they got a stable rhythm and her pupils where responsive but obviously she was unconscious so they rushed us to the hospital. After sitting in the family room for a short while, a DR came in to see us, my Uncle had thankfully joined me by this time, he asked me a lot of questions about what my mum had been doing that day, had she been complaining of chest pains etc, and then said she was very lucky to be alive but he did not think she would make it through the night as she was still unresponsive to any stimulation, even though her pupils where reactive and a scan shows brain activity. I was devastated, we where told we could stay if we wanted but there rally was no point as she would never wake up. So my Uncle drove me and my almost 18yo nephew back to my house where i was sitting in a state or fear and panic all night waiting for the phone call...

Friday morning came along and no phone call, so at 8am i rang the hospital and was told she had survived the night and currently comfortable on one of the acute wards...words can not express that feeling of relief upon hearing that news. I immediately phoned my Uncle and we went straight to the hospital where we found her in a single side room currently having a sonogram , straightway i could see something was wrong. She wasn't making eye contact with anyone, her arms and legs where flailing around and she was making very strange noises , no coherent words at all. We had been there about 20 mins when the the first consultant took us into a family room, there she explained that my mum had gone into full cardiac arrest and as a result she has suffered an hypoxic brain injury. She said it was way too early to tell the extent of the injury but the plan was to try and get her as stable as possible then start to work on the brain injury.

Now i mentioned earlier that i was already my mums full time carer, this is because almost 9 years ago she was diagnosed with heart failure and COPD. Over the past 9 years she has been treated very successfully and has adapted her life to deal with her condition. So this first consultant said that hopefully we can get your mum to a more stronger state so in the long run we can fit her a pacemaker to help reduce the chance of a cardiac event happening again the future. She also said a member of the speech therapy team will be coming to see her today to evaluate if she was able to swallow so we could take out the ivs and give her the meds and nutrients she needs orally, Sounds promising right ? i thought so too. Friday night we returned and she had been moved to the main ward area, when we visited she look very distressed and agitated, again throwing her arms and legs around, banging then on the bars of the bed and even pulling out her IVs, still no real eye contact and no words.

Saturday morning and afternoon visits repeated what we saw on Friday, by now the throwing or arms and legs had become more severe and the strange sounds and screeches had increased. Just before we left on Saturday night they decided to give her some midazolam to help calm her down and hopefully so she would sleep, however the nightmare starts the morning after.

Sunday morning about 8:20am a nurse from the ward rings me (again my body went into shock and i thought i was going to pass out) and asks if we could come up to the ward as the consultant wants to speak to us, not sure what to expect i again rang my Uncle and we shoot off up there. Upon arrival we sit with my mum who is kind of sleeping, looking quite relaxed, the consultant comes over to us and asks us to go with him to the family room. We all sit down, myself, my uncle and my auntie, he beings to tell us that my mum will never get any better, this is the state she will be in for the rest of her life and i should think about putting her into palliative care and letting her die with dignity. I was like what? I was more angry than anything else that this guy, the 4th different consultant we had spoken to in the past 3 days was telling me its time to give up and let her die. I obviously said no, he said think about it for 24 hours i said i didnt need to think about it the answer is no, how can you be giving up on her after just 3 days? i think at that moment i has ever felt so alone and isolated in my life, he said in all his experience people dont get better for this type of injury and basically i would be being selfish as she would not want this and i would regret it.

After that short but very unprofessional chat, we went to see my mum and to all of our surprise she was fully alert. I mean we where having full on 2 way conversations with her, she knew who we all where, she was inviting nurses back to her house when she felt better to look at her garden. It was like my mum was back but behind a wall of fog and child like if that makes sense. Every now and again she would get very agited , she really wanted a drink and they would give her nil by mouth until someone from the speech therapy team had seen her, the team that was supposed to come see her on Friday but didnt , she was begging me to get her a drink, not just a drink she was asking for ice cream, juice, pop, ice lollys even sasperalla, but because the speech team did not come it was still nill by mouth. She started to say she want to come home, getting very upset and asking why she cant drink what she wants. So i spoke to a very nice staff nurse who agreed to let me try a sippy cup with water and see what happens...she drank a cup and a half water along with a jug of broken ice cubes, she was so happy saying words like magic and thank you and can i have some more please. About 12pm, they set her up on a push drip of midazolam and Morhpine to help keep her calm and hopefully reduce the arm and leg moments so she doesnt keep pulling out her ivs. We noticed after about an hour that she started to deteriorate again, she told us that she felt high, she lost all sense of balance when trying to sit up and she looked intoxicated, by 2pm she was incoherent which we put down to the sedatives , not nice to see but it was needed to stop her hurting herself and pulling out the tubes. We returned that night and she was so different, she looked like she had been drugged up, we barely got anything out of her again just asking for a drink and seeing as the nurses where not legally aloow to give her a drink until the speech therapy team had given the ok, she had been left to get so angry and worked up, she looked in a terrible state, once again i gave her something to drink, not as much this time as a different set of nurses now on the ward where being very awkward about it. We left last night and it was the worst we had seen her so far, no eye contact, no more words, eyes rolling to the back of the head, all the strange noises are back and throwing her arms and legs around so violently, we didnt want to leave her like that but one of the auxiliary nurses said dont worry we will settle her down and had someone sat by her bed to make she she didnt injure herself until she fell asleep.

So finally here we are today, i arrived this morning and my mum was fast asleep, looked very relaxed, normal sleeping with all fresh new drips in her feet and stomach. After sitting with her for about an hour the 6TH different consultant cam to talk to me and my uncle about what was happening next with my mum. She said that a soon as a bed becomes available she will be moving to a new ward where still will have her own permanent consultant and her own nurse and until then just keep her as calm as possible so she doesn't hurt herself anymore. I left this morning feeling very optimistic that i would return tonight to find her in a new ward and bed, possibly still sedated but at least ready for what tomorrow brings, however turns out the bed on the new ward wasnt ready yet and she was still on the same acute ward and in the worst shape we have ever seen her, the constant throwing of the arms and legs, no eye contact, no idea of who we where or even that we where there and she had pulled out the iv drip in her foot and blood was spouting out. It was heartbreaking to see her like this, i am just so confused and after reading so much information on the internet about my mums condition i feel i am going out of my mind. They eventually gave her another shot of midazolam and quite quickly fell back to sleep.

So there you have it, 4 of the worst days of mine and my mums life and i am so anxious and confused right now as i can not find any mention of the violent arm and leg throwing being associated with brain hypoxia, and am i right in letting them keep sedating her when its obvious it is making her symptoms worse while keeping her calm ? Hopefully tomorrow she is being moved to the new ward where they specialise in Endocrinology and Metabolic Medicine which includes damage to the Pituitary and Hypothalmic glands in the brain and finally some real treatment starts to happen.

I do have quite a large family, however most of us are estranged and there are a lot of younger people, i am so grateful to have my Auntie and Uncle supporting me right now and i love my almost 18 yo nephew so much for staying with over the last 5 days, but i feel like such a burden and as much as i want to talk to my nephew he is still so young

Any words of advice or comfort would be so gratefully received right now, thank you so much for taking the time to read my story

[Lynd]

Hello Graham

What an awful time you are having at the moment. You can only take one day at a time Graham. I can't say I understand what is happening here but I just wanted to say that you will be in my thoughts and hopefully as time goes by she will improve. Do let us know how things are going. Big hugs x

[cat3]

Graham, if your mum has lucid periods then no one should be writing her off. I know that hypoxic injury can cause severe distress, confusion and even aggression but that can be addressed once the doctors have located the problem areas and found appropriate medication to calm the agitation without actual sedation.

My next door neighbour (a gentle soul) was oxygen deprived after a heart attack two years ago and became so violent and disorientated that the consultant arranged for him to be sectioned and detained in a single room with a security guard. His wife was horrified but told it was for his own protection as allowing him to leave the hospital would have endangered him and would have amounted to neglect on the hospital's part. He was home two months later and has coped well since with medication.

But with the conflicting diagnoses for your mum, you need to insist on care from those doctors who you trust by standing firm and making your wishes clear to them personally ; you've every right to a consultation with them.

I hope the promise of a move tomorrow and some suitable treatment is followed up without delay. Please keep us updated won't you...…..and all best wishes for positive signs of progress soon. Cat x

[GrahamJackson]

Thank you both so much for the replies, it seems so difficult to find some kind of positive right now so it helps more than you know just hearing from people who kind of know what its like. Well after another almost sleepless night i am getting ready to go see her and find out whats going on today.

Is this "normal" for where we are right now at this very early stage ?

Thank you again and i will keep you updated. x

[lcd8]

What an awful situation Graham. I'm so sorry that your family and your mum are having to go through this. I wish all of you the best and do so hope that your mum recovers. It must be so awful to see your loved one in this state. I'm afraid I have no real experience here as I am the patient re my brain injury. But one thing I do know if that even though its really difficult you should try to keep yourself as calm and anxiety- free as possible. Working yourself up isn't going to help anyone and I'm sure it is the last thing your mum would want. Just also to say that I realise hospitals and life within them appears to move painfully slowly. But I'm sure your mums doctors know what they're doing and won't give up on her. Try not to worry about there being so many different nurses and consultants. This is quite normal as different medical staff have different specialities.

Lulu x

[GrahamJackson]

Thank you for the reply Lulu and thank you again for all the replies so far.

I have just returned from the hospital this morning and not much has changed, she is still in the same Acute ward waiting for a bed to become free on the new ward and she is still very restless and thrashing around.

I just couldn't bring myself to go in and see her like that again so instead i spoke to yet another new consultant who has been treating my mum this morning.

I wanted to know what would be happening when she moves to the new ward, she said basically the same as what is happening here, all they can do right now is monitor her and keep her sedated to prevent her hurting herself and pulling out her IVs. The SALT team (Speech And Language Therapy) still have not been to see her, we have been waiting since Friday, if they are somehow able to assess her in this state, they can formulate a plan on how to get things into her orally.

She still has not had a scan to try and find out exactly what has happened to her brain, the consultant said they can not scan her while she is thrashing around, so i asked if they do the scan while she is sedated and she said she would bring this up with the board later. The only brain scan she has had so far was on the night she was admitted which showed brain activity and no bleeds.

I wanted to make sure she was still getting all of her other meds somehow, most of them lifesaving meds like her heart meds and thyroxine , she has no working thyroid gland, she said she wasnt sure but she would think my mum is getting them but she will check.

I was getting the usual talk from them, people with this injury rarely get better and there is not much to actually treat the brain injury etc and she told me to be careful about what i read about on headway and take it with a pinch as people do not know the complex needs of your mum. She then went on to say that the fact my mum was basically bed bound before the brain injury just goes to show how unlikely she is to not recover from this, i was like what ?? Where did you get this information ? my mum was far from bed bound, she is more active than i am. She has had COPD and Heart Failure for 9 years so she has her limitations but she manages to clean out 2 fish tanks herself, hover the whole house herself, maintain and clean the garden herself, she dresses herself, cooks and eats for herself and can even wash herself thanks to a new wet-room with a sitdown shower we had fitted recently, she has even painted and decorated the whole house herself, the only reason she doesn't leave the house is because she is agoraphobic. When i told her this , she was just like "oh right"

The only positive i took from today is that she said everything that can be done right now for her in her current state is being done, but to be honest that is the only thing.

Thank you again for reading and all your kind words

[cat3]

Ask about a fMRI scan for your mum Graham. I understand how the SALT team would find it impossible to communicate with your mum at present but there's surely no excuse for delaying a scan whilst she's sedated. Hypoxia isn't detectable on other scans but a fMRI (functional magnetic resonance imaging) scan can reveal tissue damage and other information (beyond my understanding) which might be useful.

I hope things become clearer soon regarding your mum's prognosis, but please bear in mind that this is extremely early days in terms of brain injury so you might need to take a backward step mentally and prepare for a long wait. After a frontal lobe bleed I was very agitated & restless, pulling out tubes (hands had to be bandaged) and I talked nonsense for weeks...….but here I am talking to you now.

This is a big challenge for you m'love. Try to take it one day at a time, whilst keeping one eye on your own welfare...….resting/eating/sleeping as much as you can manage.

Sincere good wishes ; Keep us updated...… Cat x

[GrahamJackson]

Thank you again for your reply Cat, i am amazed by how caring you all are being, i have defiantly started to feel less alone thanks to you all.

Unfortunately right now, my body is in a constant panic mode even though i keep telling myself to stay positive, it is still early and the agitation and thrashing will gradually subside, but its just so hard.

The little family and friends i do have, as well as the nurses, keep telling me to look after myself..and i am trying, porridge and lots of cups of tea are about all i am managing right now and sleep is slowing coming for me.

Thank you all again, you dont know how much this means to me

[Lemon-trees in reply to GrahamJackson]

Thrashing is a good sign . She's trying to make sense of her environment. Try putting extra pillows around her so she feels it's a cuddle ? Sometimes the arms need to feel something same as we would in a dark room we put our arms out to steady ourselves . To feel something solid?

It's so early on and just try be patient. If you can sit and watch her do so but ask hospital to not give agitation meds as it lulls them to sleep . I spent hours picking my husband arms legs off the side or holding his arms so he doesn't rip his food peg pipe out ! . It's a sacrifice but worth it as they wake up earlier . I used to only let them give sleep meds at night . Daytime I sat and did the exhausting job of physical handling every 5 mins of thrashing about or slipping down .

I've put a post reply of other things I did that I feel helped him .

Much love prayers for you both .

[Lynd]

Let us know how things are going x

[GrahamJackson]

Hi Lynd, not much has changed really, she is still very agitated and lost in her own world while being kept under semi full sedation, just to keep her calm and stop her from hurting herself. Today was mainly about me speaking to yet another consultant, making sure she is still on all the other really important meds she needs like thyroxine, the diuretics and her regular heart meds which she told me she wasnt sure but would check, its difficult right now they say because not all her meds are available in liquid form so they are going to check with the pharmacy to see if they are alternatives they can give her while she is like this.

The staff nurse did seem very snotty though on tonights visit ( my Uncle called her frost knickers) when i ask again about the meds and if she had been for a MRI scan and if the SALT team had been, she said if i want to talk about meds i need to speak to a doctor.....but she said that she hadnt given her any of them, and she still hasnt been seen by SALT or had an MRI. I can see whee they are coming from with the MRI because she can be still and sleeping for about 10 mins they start to thrash around for a bit then go back to sleep, so they cant seem to get her to stay still.

My mood seems to be lifting a little, most of it is down to all you lovely people on here being so patient with me and answering all my questions, and the support has just been amazing.

Thank you for asking about her Lynd, it really means a lot x

[Lynd]

Glad your mood is lifting. It is important to be kind to yourself as it's all so stressful. Sure your Mum would say the same if she could. Hope you get some good sleep x

[Lynd]

Thinking of you Graham x