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so worried - any advice appreciated


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Hello I'm new here :-)

My mum had a subarachnoid haemorrhage 7 days ago caused by a burst aneurysm.

2 days ago they moved her out of critical care and she was supposed to go to the high dependency unit, but instead she was put in a room, her drips taken out, removed off the heart moniter and left overnight. One nurse even made her stand up to sit on the comode, even with the drain in her head.

On Monday, when the surgeon found out, he had her rushed to high dependency (this is where she is now thankfully) and put back on the heart moniter and her drip put back in. She is supposed to be having bed rest.

The clinical nurse said this mistake wouldn't have affected her condition but when I visited her yesterday her memory seemed worse. She had the aneurysm coiled on Tuesday of last week.

I am sick with worry and have a constant lump in my throat. I'm so scared for her.

She is in Kings College hospital which I have been told is one of the best places she can be, but with this mistake happening I don't trust them now.

Could her sitting upright have affected her recovery?

:frown::frown::frown:

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hi bessie

i am shocked about what has happened to mum but please trust the consultant he would have delt with it believe me kings is one of the best places in london i take it mum is compus mentus otherwise she woudlnt be out of hdu please talk to consultant for reasurance and an explaination as to why this happened someone cocked up is mum aware of what is going on around? her most sufferers of sah are actullay semi reclined to help recovery so the pressure is lessened within the head it seems the nurse will be taken to task as to why and the wherefores as to her actions mums memory will be affected because of the sah as many on here will tell you there are good days and bad but the main thing is mums come through the worst and has come out the other side alive and on her way to recovery i have known kings for a very long time and their record is very good please learn to take one day at a time its going to be very very hard let mum move at her own pace with support from you in repect of pictures and memories i will pm you with mu number call anytime if i can help im a carer i also think i know what you are going through have faith in the consultant talk to him he will help support you through this please take one day at a time rgards to you and mum things can only get better take care hugs and cuddles

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Hi Bessie,

So sorry to hear about your mum.

I really feel for you, that was terrible for your mum to be so quickly treated like that, out of H.D.U. and into a room by herself, bless her.

However, like Paul has already stated the Consultant knew best and got her safely back in H.D.U.

From my own experience of having this, I know for a fact that I was as weak as a day old kitten when I was in H.D.U. So, Bessie, your mum is in the best place.

Bessie, her memory will be hazey for a while, having had a bleed in the brain, and with all the medication that she will be having will cause this, it did me.

Bessie, all I can say to you is, keep in touch with us all here, we've all had experience of this sort of thing, and we're here to help.

Bessie, remember one thing too, take care of yourself too.

Love B x

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Hi Bessie :-D

A very warm welcome to you.....i am not surprised that you are so worried, what a terrible thing to happen. But as the others have said.....your Mum is in the right place now and your Consultant is on the case. Is still very early days....i was clipped so a little different to coiling, but also was very weak and my memory was very blurry. I wish you well...please let us know how your Mum is doing.

Take care

Love Tina xx

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Thank you for all your replies. It does help to have a place like this to visit.

I was feeling fairly positive until the mixup and now I have pangs of foreboding, even though she is back where she should be. I keep pushing them out of my mind. Is this normal?

My Dad is going in to see her today and I'm stuck in work but I phoned the hospital and they said shes awake and having her breakfast.

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Bessie,

Bless you, of course you will be worried, that's so natural hun x Bessie, your mum is in the best place, she'll be very well cared for now.

It's only natural that you have those feelings, because you've had a shock too, and you're trying to come to terms with what happened to your mum. Like I said before, you have to take care of yourself too.

Take care, hun,

B x

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Hi Bessie,

Welcome to BTG :-D

Bless you, gosh your mum has been through it. Thankfully theconsultant made a good decision.

It will be a long recovery process and her memory will be hazy for a while. You need to look after yourself and trust the consltant at Kings.

Hoping to hear more good news about your mum and her recovery.

Love and hugs

Laura

xx

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Hi sorry to hear about your mumand i think you are right to worry thats the most natural thing in the world for you to do.

My wife had an sah on March 27th and was found to have two anuerysmns the first was coiled on March the 30th the second clipped on April the 4th, on April the 5th my wife sent me a very detailed text with punctuation all there and on April the 7th when i went in I was alarmed by the change in her she seemed to have gone downhill so much she could hardly talk she had no memory of anything that had happened in the last week and when physio came round and got her out of bed she could'nt remember how to walk we had to go left leg right leg and so on just to get her to move her legs i then said iwanted to talk to tom dick and harry they all came and tried to reassure me but the 70 mile drive home that night was awfull, so when i got home the first thing i did was ring the hospital as i was out of my mind with worry their answer was yes she's fine she's gone for a walk around the ward i could'nt believe it.

Now just over 4 months later and with a few complications along the way Merrill is making steady progress she is a bit wobbly on her feet not walking as well as she was that couple of days, her memory is better but not brilliant and she has all the other things that go with this which i'm sure you've read about .

If theres one thing i've learn't is that nothing is logical with this illness and things change in an instant so don't panic there will be days when things look better and days that are not so good but hopefully your mum will be like many and make her recovery in little steps forwards and backwards but i'm sure she'll get there.

all the best Rod

Edited by rod123
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Hi Bessie

Welcome to BTG hope you find it useful. Sorry to hear about your Mum but as the others have already said she is in the best place. With regards to memory and speech the first few weeks are really hard its so difficult to concentrate and words can be jumbled or totally inappropriate but it does get better with time.

Remember to look after yourself as well the road to recovery is long and rocky and your mum will need all the help and support you can give her. Take care and best wishes to your mum.

Janet x

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Hello Bessie, I bet you are worried, you have just watched as your Mum had a very serious event- her SAH and the worries about the major mistake in her care. You are bound to be worried, it's a trauma for you too so don't be too concerned about worrying, if you see what I mean. Almost without exception we all have memory problems, some for only a short time, others for much longer, so that is natural fo your Mum. If you are worried just ask, we can soon put your mind at rest as we have all 'been there' and are now functioning pretty well.Try not to just worry on your own and let the hospital make up for their stupid mistake by showing you the level of care of which I know they are more than capable. We are all with you:-D

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Hi Bessie

I would just like to add my welcome to BTG, I'm a new member, but I can already say the people on this site have helped me enormously.

Most of us here have been through what your mum is going through, and we are all still here, albeit with a few added foibles!

The main thing is she has survived the initial bleed, something approx 35% of people don't, so she is already showing she is a survivor, she's now in the best place...other than Queens of course who fixed me :wink:. She'll be on Nifedipine to prevent vaso spasm and pain relief, before you know it she'll be home getting under your feet!

Please don't worry, she's in the best place, she probably won't remember much of her stay in hospital, it's you and your Dad who will be having a hard time of it now, I know my wife did. Look after your selves and above all remember she is now on the road to recovery.

Best wishes

Adam

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Guest ElaineW

Hi Bessie

I know exactly what you are going through - my mum had hers SAH May 2008 and it is a very traumatic time for both your mum and family. She most be doing pretty good to have been eating her breakfast. The best advice I would give to you is take each day at a time and more importantly be prepared for lots of ups and downs, I found that the hardest thing of all belive it or not going in one day and seeing an improvement and the next day have taken steps backwards. Lots have likened the process to a rollercoaster and it sure is. Everyones recovery is different but mum's event some days seems like only yesterday. Confusion and memory problems are I would say always a feature so try not to get too alarmed though I know it's hard. Your mum has survived what many don't so she is doing brilliantly I would say. Never be afraid to ask questions or you will go home and turn things over and over in your mind.

My mum (as lots of mums are) are very special. Mine is even more special now and your mum will be the same. When you come so close to losing someone you love so much its a feeling that unless you have been through it no-one can explain how you feel. I kept a diary for mum which you may or may not want to do, it helped me. Look after yourself too, that's easy to neglect. Keep us posted

Elaine & Maggie xx

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Hi Bessie welcome to btg and sorry about what happened to your mum, but I expect that it won't do much to stop her recovery I was going outside and down to the smoke room with the drain in my haid i used to have to drag the bag with me on a trolley thing. Jess.xxx

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Thank you for all your messages.

I have just returned from the hospital and my Mum is not looking too good at the moment.

She has an infection where the drain in her head is and its clipped off at the moment. She will have to have it removed and replaced with a new one.

The nurse gave the usual medication and she couldn't even wake up to take them. She ended up chewing them and had a sip of water through a straw. She had some of the tabs in her teeth.

Whats so worrying is that on Friday she had a scan and the consultant said she was doing really well and they would keep checking to see when the drain could be removed? Now the very next day she doesn't know who I am, cannot wake up and if she does wake up she just stares into space and then doses off again.

The weekend doctor said she is like this because of the infection and she will improve but I'm so worried now. She is on IV antibiotics.

I can't help but think the worse and my poor Dad (who is up the hospital now) I feel so sorry for him. Its such a scary time.

Just found out that the consultant who did the operation on my Mum 11 days ago has now gone on his holidays so we are now having to have another consultant!

Edited by bessie
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Bessie, these times must be terrible for you and the family. I was told to sit up after my coiling and the consultant went crazy with the nurse who allowed me to sit up.

The first few weeks for me have been explained to me as i cannot remember a thing. Time is a great healer and i am now 20 months after my injury and do feel more comfortable currently.

I made rapid improvement from about the fourth week to the six month mark. Try and be patient for the next few weeks as Mums brain has underwent some massive changes and she will take time to adjust.

I hope this helps and if you have any questions please ask away.

Prayers for you all.

Stephen

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Hi Bessie

Give it time and i'm sure all will be well. I had two drains and hydrocephelus, my husband didnt know if I would make it and I think always feared the worst, but someone said just give it time, it will seem like one step forward and two steps back but she will be ok. I dont remember anything for 2 months and did some really stange things but am hear to tell the tale!

Take Care

Caroline

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hi bessie

im sorry i have been away please dont worry to much i know it sounds crass but lin and i have been through this sounds exacatly the same infections really do knock you out lins had this four times she is still with me i know how you feel please trust the consultant the brain is very complexed and remember mum is not only fighting the damage caused because of the blood now she has to fight the infection the iv drugs work faster and more effectively and hope fully you will see a change in 3-5 days where mum becomes a little more aware i would like to suggest thaat you dont stop talking to her get a walkman and leave the ear piece playing her favorite music get a diary i think an A5 book and write a daily entry of what is going on within the ward and what you have been doing and explain why she's in hospital i have kept mine up to day i still make an entry so im hoping either lin can read it or i can read it to her when she's a little more with me god i do know how you feel fingers crossed keep faith and just take a day at a time she gone through the hard bit now look forwards to the future i think i sent my number if you want to rant if not i will send it shortly take care we are thinking of you take care

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Guest ElaineW

I will be thinking of you through what will be difficult and traumatic times ahead but as others have said try not to get too disheartened( though it is easy to say) but believe me I, and others have been through this and it does get better. Confusion is very common, after all the brain has suffered a major event Many a day my mum did not wake or when she did was very confused. Never be afraid of asking questions at the hospital, that's all I seemed to do but if you don't when you get home you will have all sorts of things going round and round your head and no answers. Try to take each day as it comes, that is the best advice I would offer as I found no two consecutive days were the same. I hope you see some improvement in your mum soon, if not try not to worry too much, everyones recovery is different. Just keep talking to your mum, hold her hand, squueze her fingers, kiss her and she will come back to you I am sure. Never give up hope.

Elaine

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Guest jackie webber

Hi Bessie I am sorry to hear about your mum. I had my SAH just over 2 years ago and am still making progress. I have two children aged 14 and 16 who have been through the mill but friends have been a Godsend! This may sound mercenary but take everything you are offered. Make sure you get your sleep and nourishment and keep in touch with us all. Thinking of you and your mum XXX

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My Mums getting worse because of the ventriculitis infection. She is now completely unconscious and is being fed through a tube.

She will have to have a tube in her throat to help her breathe soon we have been told.

My Dad has booked an appointment with another consultant (as the one who did Mums coil surgery is on holiday) for tomorrow to find out exactly what is happening.

Its so frustrating because she was doing so well until she caught this infection and now she is going downhill fast.

Her lips are cracked and bleeding, she had faeces under her fingernails (which I cleaned this morning), so it makes me think she got this infection because of lack of cleanliness in ICU?? Maybe I'm being too harsh because I am so angry, sad, scared, frustrated and I want my Mum back.

How would she have caught ventriculitis and can a person recover from it?

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  • 2 weeks later...

Its been such a long week - my Mum is doing better and they are stopping the antibiotics for the ventriculitis infection on Saturday. My Mum woke up 3 days ago but is finding it hard to speak and is still very sleepy. She is back in HDU now.

The neurosurgeon who did her coiling is back from holidays and he did mention the possibility of a permanent shunt? He did say that we will cross that bridge when (and if) we come to it, but just in case - what is a permanent shunt and what does it involve?

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Hi Bessie sorry to hear about your mum, Merrill my wife had a shunt fitted and it is a small valve/pump fitted under the scalp which drains away the spinal fluids usually into the abdomen this is needed because of a blockage, and this is known as Hydrocephalus,

What the ns never told me was very often after a period of time the blockage does clear and the shunt becomes redundant, although they will not remove it once it has been fitted, hope that helps a little

Regards Rod

Edited by rod123
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