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ToriC

Tori - 5 weeks is still very early days?

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ToriC    18

Hi all

i am new to the group.  My name is Tori and my Mum, Pat, has been in ICU 5 weeks today.

 

5 weeks ago my Mum collapsed with the worst headache, her voice went slurry and she quickly lost consciousness.  She was rushed into her local hospital where she had a CT scan, which confirmed a huge bleed in her brain.  

 

She was then blue lighted to a fantastic neuro team 30 mins up the road, where she was straight into brain surgery.  This surgery was to insert a drain (EVD) into her brain to relieve a huge amount of pressure and blood.  

 

The neuros said that she may not make the night and the bleeding was grade 4-5.  Anyhow she came off the ventilator the next day but did not really wake.  

 

By the next day she had moved her arms a little and said yes and no.  Then she went for surgery to have 1 ruptured and 1 unruptured anuerysm coiledit took 6 hours.   

 

By the weekend she was back on the ventilator and sedated due to seizure activity detected-could have been from the coiling and swelling etc.  Then after 3 days on sedation and lots of seizure meds, she was weaned off it and she was left to wake up but still ventilated.  

 

She was very intermittent with commands and sometimes would stick her tongue out for the nurses, and sometime wouldn't etc.  Her breathing was good as the ventilator was assisiting her rather than completely breathing for her-she then went for surgery for a tracheostomy.  She then made more improvements with pain reactions and some eye opening, and told one of the nurses she was ok one night.

 

She nodded at me a few times too and was moving her head around etc.  Then she had to go back to surgery to have the drain realigned as it had migrated.  This was 3 weeks in to her ICU stay...then 2 days after the drain realignment infection hit!  

 

Her temp sored and so did her heart rate...she was shaking uncontrolebly.  Therefore sedation was the only answer so she then spent 10 days in and out of heavy sedation so that the infection could be treated.  The infection was in CSF and Ventriculitis set in.  

 

At the weekend the sedation was finally lifted successfully with no soring Heartrate or temp.  She now has daily lumber punctures and the drain has been removed (it was harbouring infection). Her opening pressure is getting better so I'm hoping her ventricles will get smaller and the CSF is no longer growing bugs.  Since being off all the sedation 2 days ago she hasn't really done anything-her eyes open when she is turned and they open when she coughs.  But her body is now very still.

 

I'm really hoping that the sedation is just taking its time to go and that the Ventriculitis could be holding things back.  I'm just looking for experiences really and hoping that 5 weeks is still very early days??? 

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subzero    7,145

Hello Tori.   A warm welcome to BTG.  Great that you have found the site so soon after your mum`s SAH.

You are in good company with members who are eager to share their experiences with you, and support you when needed with answers to your questions. There are also over 10 years of historical cases within the various forums. As you find your way about the site these will prove most helpful.

 

We only offer support, and do not give any medical advice.

 

You and all your family have been on a traumatic journey since your mum experienced her SAH five weeks ago. She has obviously suffered so much as the medics tried to stabilise and treat the bleed.

The anxieties during that time you will never forget. You are no doubt physically and mentally exhausted.

 

It is very early days in her recovery. It will be several months before you will get some indication of what longer term damage has been done because of the bleed. Every SAH recovery is different. You have done so well by being there for your mum. Keep talking to her even though you may feel she doesn`t hear you. Keep encouraging her.

Also please make sure that you and your family take time to look after yourselves.  Eat and rest well.  Talk about your own worries.

 

Mum`s brain will take many months to heel and during that time , especially at the outset, you may find that her personality has changed and her reactions are out of character. This may change with time. Memory and fatigue issues will also be very evident.

 

She will be in great hands with the neuro staff.

 

Please keep in touch and don`t hesitate to share your concerns with us.

 

 

Subs

 

 

 

 

 

 

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Winb143    5,603

Hi Tori,

 

I had Ventriculitis after drains put in and I remember nothing. 

 

My hubby insisted that him and my Daughter take it in turns to look after me, I was never left alone  xx

 

My Sisters used to sing to me also.  This is what I am told as I remember zilch .

 

I wish your Mum all the best and hope she goes from strength to strength, you have a long haul both you and Mum xxxx

 

After a year I had a shunt put in as I had Hydrocephalus,  I was told I woke up and sang to nurse who promised me she'd put my cross on !!

 

I can only tell you what happened to me, but singing old songs helped me xxx and being spoken to, although I couldn't reply.

 

Keep Mum happy and sing she might not look like she can hear  but I was told I corrected my Sisters on wrong words  xx 

 

Good luck Tori's Mum xxxxx

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Daffodil    4,402

Hi Tori, 

firstly I'm so sorry for the heartache you and your family are experiencing right now but you are doing all you can watching over your mum and helping her to heal and she will feel and know that love. Talk to her, put pictures up round her cubicle sing and just give it a bit of time to see how the effects reveal.

 

Noone can predict the outcome as we are each different , i for instance had a grade 4 and coiling and EVD placed its a considerable ICU stint and like Win I also had a shunt placed at a later date but was fortunate not to have the infections others and your mum have had which does complicate and delay recovery. I now don't think in terms of recovery  but more my evolution of adaptation that continues today five years on from my event

 

 The effects of all the drugs, the multiple operations and procedures she has had and especially the LPs she is now having will be leaving your mum completely wiped out and can be suppressing any ability to respond. I suggest keeping a diary and getting everyone who is visiting to note anything in it and also to just keep encouraging. In my quietest and stillest of times I still could always feel the love. Talk to your mum, let her know how things are getting on, play some music and give it time. 

 

Always hope to be had. Take care of you, she will want that as well. 

 

 

 

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ToriC    18

Thank you both so much for your replies.  I have put music onto an I pod for her with some of her favourite artists, so she is listening to that.  I go in the morning and my brother goes in the evening...

 

Today she has had lifted and moved her left arm a few times-this is the first time I have seen this since she got Ventriculitis.  And she has moved her head from side to side and reacted when I said "Mum, open your eyes".  She was really trying and frowning a lot.  I am hoping we are getting back to what we had before the infection and then can build on this.  

 

She is a very strong woman and I am sure she is thinking about being at my wedding next Summer. Xx

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Macca    9,843

Hi Tori,

 

Although it might seem like a lifetime to you, five weeks is very little time at all in terms of a brain injury.

 

I don't know if you ever watched the old series of 'Life on Mars' (with Philip Glenister) about the detective who was knocked down by a car and mentally transported back in time to 1973.  The undercurrent was that he was lying in a hospital bed in a coma whilst these adventures from 1973 were going on in his mind. The objective for him is to get back to the current day.  Eventually after 8 episodes of lying in bed, he was aware things were going on even though he could not communicate to those around his bed, he came round. (There is also a second series.) 

 

The point I am trying to make is that your brain can take things in even when seemingly unconscious, and so you should continue talking to your Mum and reading and singing to her.  She has taken a tremendous knock and it will take time to recover from it.  At the moment, you can see the car (your Mum) but can't hear the engine (brain) ticking over but you know it is running because you can see the exhaust (breathing).

 

With patience, determination and perseverance, and showing her the love you have for her, that will give you all the hope, and strength, to beat this thing.  Hopefully she will improve enough to take part in your wedding day and I am sure that subconsciously she is fighting to be there for you.

 

She will need time to recover and will have to make small steps to progress, and rest well in between.  It's a long hard road that many of us have been down, but once progress has started, you soon reach a point where you are nearer the end than the beginning.

 

It is also important that you are in a position of strength to be able to help her, as if you let yourself be dragged down you will be in a position to help nobody.  So, continue to prepare for your wedding, then tell your Mum what you have done. If anything is going in, that will be the top of her list. 

 

Best wishes,

 

Macca

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Winb143    5,603

I do hope all turns out well for Mum and your wedding Tori  xx Bless you. 

 

Glad Mum is making some improvement ie moving arm

 

I remember seeing my Daughter in her school uniform walking with her Dad but she was in her 30's when I had my SAH,  guess it was a dream but she looked so sad I run to her and that's  when my shunt kicked in. 

 

You and your Family take care  and naturally Mum xx  as we'd be lost without our Family xx

Love

Win xxxxx  

 

 

 

 

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ToriC    18

Hi all

thank you again for your kind words.  We have made a bit of progress over the last couple of days.  

 

She has only been doing trachy mask trials for the past 2 days and ended up doing 7 hours on it today.

 

She was also showing sleep/wake cycles...when you caught her in her awake state she would open her eyes and mouth words-she even cried today.  

 

But then she drifts off into unconciousness again... she also nods and says "yes".  The physios have had her sat at the end of the bed-fully supported obviously but it's a start.  

 

The neuros say she still has some swelling of the brain so as that goes down her consciousness should improve.  I will be back to see her in the morning.  Xxx

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subzero    7,145

Hello Tori

 

Thanks for your update.  Hopefully your mum will show sings of greater recovery with time.. In these early days her body is so weak and tired and as we have said, her brain will be trying to readjust to the bleed. At this stage rest is all important. Her hours asleep are so crucial to her getting stronger.

 

Hope you and your family are adjusting ok.

 

 

Subs

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ToriC    18

Hi all

my Mum is now nodding and opening her eyes to response.  

 

She mouths "yes" and "no" and mouths things that I don't know what she is saying.  

 

She is also reacting more to pain.  She isn't doing all the mentioned improvements all the time, bit she is more often each day.  

 

The physios have hoisted her into a chair a couple of times and we got to take her outside.  When they did some exercises with her, she held her own head up-it was amazing to see!!

 

She has been on the trachy mask for 16 hours yesterday so could be ventilator free this week!! She will be able to talk when she is trachy free hopefully.

 

I just hope she improves from here...the drs are still monitoring her with EEGs but they are still saying minimal brain activity is showing  when she is improving so much?! Maybe I just take the EEG with a pinch of salt? 

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ClareM    2,851

Hi Tori

 

Sounds like mum is making progress which must be encouraging for you. 

It still is very early days and she has a long road to travel. I don't expect anyone knows how much she will improve only time will tell. 

 

Keep being the wonderful daughter you are now by being with her and encouraging her along the recovery road. But make sure you look after yourself too, it's easy to forget your own health at a time like this. 

Take care and keep us posted on her progress. 

 

Clare xx

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Winb143    5,603

I agree with all what Clare says Tori.

 

As long as you can see improvement, let the hospital worry about tech. details you worry about getting Mum back xx  I remember my daughter playing a game with my hand but she was doing therapy on my hand. 

 

Also I asked her to give me my bag up and got annoyed at her as I thought I was in a café with her but it was lunch in hospital xxxx  All this I am told by Daughter and we had a good laugh about it.

 

Take care of you and Mum and keep Mums spirit up xxx You are a good daughter xxxx

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Macca    9,843

Progress is progress, no matter how small the step.  Hopefully she'll keep making those steps and they will get bigger and more frequent as time goes on.

 

Make sure you keep supporting Mum as best you can and that she can see you there doing it.  Then she will know that you love her and that you haven't given up on her.

 

That will be all the encouragement she needs to keep on fighting.

 

Keep on encouraging and talking to her.  Let her rest when she needs to and then just be there for her.

 

Good luck

 

Macca

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Daffodil    4,402

I agree with Macca and Win and Clare.  I think the hospital will always err on the worst case scenario but the answe is no one knows and don't forget in a way this is their normal everyday event so to a certain extent they don't allow for the individual who is behind all the interventions and what that person is deciding and what they bring to the fight. 

 

You know your mum and will know what her character and stubbornness may be like. Yes all the interventions are amazing and ultimately save life's but that done it is then in your mums choice to battle so keep encouraging her. 

 

The brain is the control centre and it's going to conserve and channel  lots of energy into healing and running essential bodily activity  so other stuff Is lower down the to do list and the hydrocephalus really wipes out a lot of function for a fair while. Have hope. 

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Winb143    5,603

Listen to Daffs, Tori.  and do not  give up xx

 

Because I have always been a moo I was an awkward patient ie they gave me shapes to put in the right holes and I banged them in knowing it didn't fit.

 

Even my Daughter said "Mum you used to cry when OT's came near you" I just had a feeling they never meant me any good, Hydrocephalus !!  maybe  lol

 

Then they told my Daughter to grieve for me as I'd never be the same person I was before. My husband didn't agree with them  phew !!!   He knew I was in there somewhere.

 

Fight for Mum and keep singing to her  xxxxx Never say never and I  hope Mum gets well soon xxxxxxx

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ToriC    18

Good news is is that she is going to a neuro ward now!! As soon as there is a bed for her ??. She has responded to the neuros the last too days-when they say her name she opens her eyes.  

 

She has been in the chair for 2.5 hours today and has been out in it each day since Friday.  When she is awake she nods and shakes her head when you ask her questions...she also mouths yes and no and looks like she is teittering one but I cannot lip read.  

 

She has also been breathing completely for her self for the past 2 days.  They will therefore but a speech valve on her trachy in the next day or 2.  She sleeps a lot!! Xxx

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Macca    9,843

Hey Tori,

 

Good news that they are moving her from ICU.  Also that she is responding.  Like I said progress is progress.  Sleeping a lot is natural after SAH and some take longer than others to recover but the trend seems to be upwards from what you are saying.

 

Overwhelming tiredness is common, both physical and mentally.  It is just the body's own way of telling that it needs rest. Some need more than others.

 

Her brain has taken a fair old knock and as it is the control centre for her very being, it needs a lot more nurturing and care during recovery.  It isn't a race, her body will recover in its own time.

 

That may be frustrating for you, but believe me, as one who has been through it, time is the greatest healer, but you can't just pull it off a shelf or out of a pill bottle.  You have to be very patient but if you go back just to the start of this thread you can already see the progress your Mum is starting to make.  You just need more of the same, but it will be a long hard slog at times.

 

With determination and perseverance, there is every chance of success.

 

Good  luck,

 

Macca

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ToriC    18

Thank you so much for your kind words.  She is now on a ward-she has been there for 3 days now and already looks better.  It's so light and airy there and she shares the room with 3 other ladies so a lot more "normal".  She has been responding more and staying awake for longer spells.

 

When she was awake I did show her a picture of my dog (who she adores) and she recognised him and mouthed his name-it brought a tear to my eye!!  She also said "no" and "yes" to the neuros this morning so they now know that I am not lying to them when I say she responds.  She is in such an amazing hospital-I cannot fault the North Staffs hospital...amazing people!! More physio tomorrow and a possible shunt next week! X

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Macca    9,843

Tori - great news, thank you.

 

The submarine is coming off the sea bed and will surely rise slowly to the surface!

 

Keep us posted!

 

Macca

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ToriC    18

Hi All

so it has now been 2 months since my Mum's rupture.  She has been out of ICU for 3 weeks now and is just waiting for a bed on a rehab ward.  She is being spoon fed food-she only had her trachy out last Monday!! And she is now talking.  She isnt making much sense at the minute but can kind of put small sentences together.

 

I'm sure that once she goes to rehab they will get her talking, walking and remembering again.  She had the shunt done on Wednesday and seems to have made huge improvements since then-she is awake more and the conceiousness is not fluctuating as much.  Hopefully it's onwards and upwards now xx

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Skippy    7,061

Hey Tori

 

Thanks for the update.  It sounds like your mum is making lovely progress.  So pleased for you, have everything crossed that it will continue.

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ClareM    2,851

So glad to hear your mum is making steps in her recovery. All seems very positive. Hope she continues to improve   

 

Clare xx

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Macca    9,843

Keep your spirits up Tori.  Eight weeks is still very early in brain recovery terms but already you can see real progress, just as we said you would.  Hopefully, Mum will be ready for that wedding and will be able to take it all in! 

 

The trend is upwards now, but it will still be a long hard road.  Just take one step at a time. Keep a diary and in six months you will be able to see exactly how far she has come.  You can already see progress so think what it will be like in another six months.  You will see a measured increase in her abilities, and for her that road will have been an immense journey.

 

It is vital now that you continue to support Mum and let her know that you are doing so.  Internally that will be a tremendous lift for her. even if she can't fully express it yet.

 

Thanks for the update - keep posting!

 

Best wishes,

 

Macca

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ToriC    18

Thanks All

She is speaking a lot now but still isn't making that much sense.  I think she thinks she is in various different scenarios and she willl suddenly say things like "we have a lot of booze to finish off" and says things about old relatives that are not alive anymore??  

 

I'm not entirely sure how good her vision is-sometimes she makes eye contact with you and then all of a sudden she is trying to look all around the room for things-you can wave your half around in front of her eyes and she doesn't react or follow you.

 

 She was also trying to drink out a wine glass that she thought she had in her hand-it wasn't there at all so she must have been imagining it.  They do say that vision can take a while to come back or improve.  She is now trialling puréed food-she said the custard was disgusting but ate some puréed chicken and veg last night.  Hoping to go to rehab soon! Xx

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