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LoweySW

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Last Monday night my dad (75) suffered a grade 4 SAH. He was transferred to the regional hospital where the aneurysm was successfully coiled and an EVD fitted. 

 

Since then he has been in intensive care on a ventilator and has been through a cycle of being off sedatives in the day and then back on them at night. 

 

Unfortunately overnight the EVD clotted and he was rushed into surgery. Thankfully he made it safely through the operation and is now back in ICU. 

 

We’ve all gained comfort from reading people’s stories and recoveries. I know it’s early days. But we have a few worries that don’t seem to have been answered in the hospital. 

 

When my dad first came round from the general anaesthetic (which they kept him on overnight) he seemed to recognise us and grabbed and squeezed our hand. He was obviously drifting in and out of awareness, but a lot of the time he seemed to be able to respond. He initially couldn’t move his right hand side but through the first couple of days that movement increased and he can definitely feel down that side. 

 

Our main concern is that as the week has progressed he seems to be less and less aware of us. Partly he’s sleeping more, but also he’s obeying commands less and less and yesterday not at all. He was opening his eyes at intervals and we thought he was listening, but didn’t squeeze our hands when we asked as he had done earlier in the week. 

 

Does anyone have any experience of this? 

 

He just seems to have got weaker and weaker through the week and, of course, we’re all so worried.

 

The plan each day is to try to get him off the ventilator (and sedatives so they can assess him better), but each day he’s weaker and coming off the ventilator seems further away. Earlier in the week he was trying to grab the ventilator out but now he’s just lying there. We're at a loss. 

 

Thank you so much 

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Welcome to BTG.

 

We are not medically qualified so cannot give medical advice, just support.

Recovery from SAH can be a roller coaster ride, everybody is different. My advice is to talk to his doctors to see if they can give you any explanations.

Recovery, in the most part, is a very long slow process. Keep on talking to him whether or not he responds, it is all stimulation. His brain has had a nasty onslaught and will take time to heal. Make sure he is keeping well hydrated as that will help any ensuing headaches he has.

 

Please come back to us if you need support and to let us know of your father's progress.

 

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Hi there warm welcome, glad that you found us.

 

And yes recovery is definatly very much a rollercoaster ride for patient and families...

 

yes keeping hydrated is a must especially in the dry air of a hospital.  everyone reacts and recovers differently I hope things inprove soon take care.

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Hi Lowey xx

 

I had an SAH4 I was nearly 63 shh !! 

 

Moved on to Maidstone hospital and the OT's sort of gave up on me as I had hydrocephalus but my Family never.  My Daughter was told to grieve for me as I'll never be the same person I once was. My Sisters used to sing old pub songs my Dad sung to us when young, none I can sing on here too rude lol   xx

 

Make sure Dad is well looked after and sing or talk about old days as our short term memory is rubbish lol.

 

Keep him happy and always be positive even if you want to cry xx Got to go now 3rd time of typing this with migraine. 

 

All the best to your Dad and Family 

 

Love 

 

Win xxx

 

 

 

 

 

 

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Thank you so much. 

 

Thanks for the reminder to keep talking. It’s hard when you’re not getting any response, but it’s obviously so important. 

 

I really am so grateful for this site. It’s the most positive thing I’ve found. 

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Lowry welcome to BTG I had my SAH in January last year  and I have had lots of ups and downs but I do find drinking lots does help and when I need to have a rant I come on here everyone is so good to me I don't know what I would do without this site I wish your dad well in his recovery 

All my love Andrea xx

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49 minutes ago, LoweySW said:

Yes, of course. I understand that. 

 

Really I just wondered if anyone had experience of similar. 

 

Thanks

In the main I don't think many survivors can tell you what happened to them in the early days as most were completely unaware of what was happening. They possibly only know what they have been told by their family.

I know, with me, it was about 9 months after the event that I really started to be aware of things happening around me and I was at home then. Did have small snatches of memory during that time though.

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4 hours ago, Super Mario said:

In the main I don't think many survivors can tell you what happened to them in the early days as most were completely unaware of what was happening. They possibly only know what they have been told by their family.

I know, with me, it was about 9 months after the event that I really started to be aware of things happening around me and I was at home then. Did have small snatches of memory during that time though.

 

That makes complete sense. Thank you 

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Hi Lowey,

 

I think your Dad has gone into recovery mode.  The body seems to have a natural way of retreating into itself while healing takes place.  His brain has undergone a horrible experience, however, this is why it is important for you to keep talking to the medical people looking after him.

 

Have they put him on any drugs that have side effects that appear to make him more lethargic.  Are any of them sedatives to keep him calm?  Are they controlling the state he is in to give his body the best chance of healing, in its own time?

 

Write down some questions you want answering and ask the medics the next time you get a chance.  Don't try to do it from memory, because in the heat of the discussion, which is often emotional because you are family, you will forget and not have the chance to ask again for some time.

 

It is at times like these when you need the greatest patience, since he needs to recover in his own time, and not the time that you want him to.  That is an important distinction.

 

It is important for you to keep talking to him, if you can't think of anything then read articles from a news paper or magazine.  People take in more than you think, even if it seems there is little response at the time.

 

Good luck

 

Macca

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Hello, and also a very warm welcome to BTG. So sorry to hear that Your dad has experienced an SAH.

 

The good news is that he has survived..... despite the low survival rates.

 

The past seven days have no doubt left you and your family traumatised as you became aware of the severity of what happened to dad, and dealing with the days immediately following when you were scared that he indeed might not survive.  Your daily routines have no doubt been turned up sides down as you have rearranged your schedules to spend time in the hospital.  It is a very emotional and exhausting experience.

 

So glad you found the site early and that you are already finding help and support as you read from the experiences of our members.  There is so much within the various forums to help you in the days ahead.

 

As others have said, seven days on is very early to gauge recovery.  Only in the coming days, weeks and months will the true extent of the trauma to his brain become evident. Time spent in hospital can vary from days to months, and as every bleed is unique, there is no one given path of recovery. 

 

For some, following several weeks of very anxious times in hospital can be followed by substantial progress, while for others there may be prolonged hospitalisation and rehabilitation required. 

 

Please be prepared to have patience... and trust these incredible medics in the early days. Ask them to help you understand how they are assessing your dad.

 

Please also ensure that you and your family take care to look after yourselves. You need to be strong for dad, so eat well and sleep well as you spend time encouraging him in the ways mentioned above. 

 

We look forward to you keeping in touch and continuing to ask for help and support.

 

 

Subs

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2 hours ago, Macca said:

It is at times like these when you need the greatest patience, since he needs to recover in his own time, and not the time that you want him to.  That is an important distinction.

 

Thank you for reminding me of this. I'm beginning to see how important patience will be over the coming days, weeks and months. It's good to keep this at the forefront. 

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1 hour ago, subzero said:

The past seven days have no doubt left you and your family traumatised as you became aware of the severity of what happened to dad, and dealing with the days immediately following when you were scared that he indeed might not survive.  Your daily routines have no doubt been turned up sides down as you have rearranged your schedules to spend time in the hospital.  It is a very emotional and exhausting experience.

 

This is exactly how it has been. There is certainly no manual for times like this. 

 

1 hour ago, subzero said:

Please be prepared to have patience... and trust these incredible medics in the early days. Ask them to help you understand how they are assessing your dad.

 

This is a really good point - asking them how they are assessing - I'm not sure we really do understand at this stage. I'll make a note to ask this. Many thanks. 

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Hi and welcome to the site

 

Eight days are extremely early to expect anything of a major concern.  Your dad has had two major operations within a very short amount of time the fact that he held your hand and reacted to you is a massive achievement.  For such an event most people don't react this soon which is the good news and at present  because of the two operations takes so much out of dad.

 

 I found starting a diary and leaving it by his bed so others can add to it a very good way of dealing with the uncertainty and the concerns you have.  Put it all down and anyone else can add to your thoughts.

 

They may keep dad sedated for medical reasons  and to aid his recovery so take some deep breaths and trust the hospital staff and drs.  All the family will be up in the air not knowing what's going on and what's going to happen, not only to dad but the family.  Everyone needs to relax as much as you can and make sure everyone takes time for themselves and in doing so everyone will support each other.

 

 I`m sorry to say but this is not a sprint, this is going to be a marathon and needs to be taken one step at a time.  Designate one person to converse with the drs because many voices can get confusing to drs , who can relay all information clearly and concisely to everyone else  all one can do is wait.  Its going to be hard but we are here should you want to vent scream and shout if you need to let off some steam,  and if you have any questions good luck for now   Hope dad comes round soon and shows he knows you are there and keep talking to him all the time.

 

 All the best xx

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Thank you all so much for your thoughts and advice. There really is very little information out there to help in times like this so I really appreciate it. 

 

It looks like we’re able to get an appointment with the neurology team for an update tomorrow so hopefully that will help too. 

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Write all the questions down that you want to ask so you don't leave the appointment thinking "Oh we should have asked about??????" Be well prepared.

 

It may be an idea to write down the answers too so therefore avoiding any confusion.

Don't let the doctors rush you, anything you don't understand, say so, to avoid speculation on your part later.

 

Hoping the appointment goes well and you get all the answers you need to put your mind at rest.

 

 

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Good  luck Lowey and Family xxx Hope you get some answers and Dad is in a singing mood or talking  xxx ;) But remember he is still healing his bad head  xx 

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I m definitely not an ICU physician and we are not allowed to give med advice.  

It is still very early. I m not sure what other medical conditions he has such as heart disease, diabetes, emphysema, kidney disease etc etc. I think there are many things at play here . If he s on a vent, he needs to be sedated and I m not worried about him not responding much. I know it is hard.

 

Everything has to be in balance such as his sodium, potassium, magnesium, heart rate,urine output, nutrition, what meds he was on before SAH if any etc. how are the liver and kidney doing. Any infections from catheter etc etc. The vent setting also needs to be adjusted from time to time and I m sure they are addressing that.

I ll ask questions to icu doc, neuro and neuro surgeon. I m sure they are taking good care of him.

 

Please be patient and get rest yourselves as well.

Good luck to you.

You ll see this website s very helpful. 

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Time, patience, love and prayers.  It's so early.  Pressure on the brain causes strange behavior and poor memory.  Give him time.  I send you best wishes!

 

Chris

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Hi Family Lowey

 

Not much else to add other than to say I could feel the love surrounding me. That may sound strange and I have no recollection of events and my time in ICU but I afterwards I knew I could feel the love during that time.. 

 

Whilst he is in that state Then he really isn’t going to respond much but I do believe he will know and feel your presence so talk to him, a diary is great idea  and also put family pictures stuck to his cabinet for when he is more awake.

 

Baby steps. I had a grade4, EVD and later a shunt. The pressure on the brain knocks the senses out of whack especially when he had a EVD block(I did also) and he will have also lost a lot of CSF fluid in his ops so basically he’s feeling like he’s at the bottom of a rugby scrum right now. Ask lots of questions and keep an eye on how he is doing, colour, skin tone, etc. 

 

Love , hope, and healing thoughts for him and sending you all positive recovery vibes. Keep your food and strength up and share out all the visits between you. As Paul says this is a marathon but a whole lot is possible.

 

Good luck 

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