Ash Posted July 27, 2010 Author Share Posted July 27, 2010 (edited) Hello again all, Well today i managed to speak to the doctors looking after mum and it was a bit of a sobering talk. The good news is she's had her CT scan and it showed there's no deterioration in her condition and she hasn't suffered any further strokes. The doctor said being out of itu and hdu and on the ward was a good sign as is the removal of the ventilator. They are also saying they want her to move to her local hospital, the Whittington in Archway, for the rehab and further treatment. The bad news is, as we have suspected, mum's neurological recovery has been "limited". She's still not really moving anything or responding to commands and her gcs is around 6 which is still rather low. But then they say she's done well to get this far, given the severity of her injury, and she's fighting hard so only time can tell what type of recovery she will make. It's all very uncertain which doesn't make it any easier to deal with and i'm trying hard not to even think to far into the future as i have no idea what that holds. It's a bit scary but i don't know what else to do other than remain positive and hope for the best. I do find it hard to do sometimes tho.. It's surprising how fast they are planning to move her and i'm a bit concerned it's too soon. But the doctors say she doesn't need any further neurosurgical treatment and her rehab is better done at her local hospital. I'm having a bit of a hard time at the moment dealing with the uncertainty surrounding this but i'm trying to keep positive and hope for the best. My sister is finding it hard to juggle looking after her one-year old and get to the hospital so a lot of the time it's just me there with either my dad or my cousin who's been a real help to me through this. I always write these posts wishing i had something really definitive in terms of progress to say but i suppose you all know it's a long old road and things happen slowly. But if i could see my mum move an arm or leg it would mean the world to me. Today she seemed to smile at us after we played some music to her..that was really great Wishing you all well...Ash Edited July 27, 2010 by Ash Quote Link to comment Share on other sites More sharing options...
Ash Posted July 27, 2010 Author Share Posted July 27, 2010 I do really confused about things tonight. How long will the lack of movement and response last? Is there anything i need to look out for or be aware of? Sorry guys but i've just been feeling a bit lost tonight. Quote Link to comment Share on other sites More sharing options...
paul99 Posted July 28, 2010 Share Posted July 28, 2010 (edited) hi ash thanks for the update on mum it is good news that she is on a normal ward and that there is no further damage recorded yes i understand that they want mum to a local hospital because their job is completed this happened to lin it is a blow you feel comfortable at queens and you feel that going to a new hospital brings all the fear back again as you feel that you are starting all over again it took Linda until the middle to latter part of October before i saw Linda move anything and even then i thought i was seeing things but slowly things did start moving it was a shock but a pleasant one it is still early on and mums Glasgow coma scale will improve as the brain is still trying to make sense of what has happened lins varied from 2 through to eleven mum has done well believe me she has come through what would normally have had a different conclusion one thing i will ask you is mums eyes clear and focused if the are although they maybe drifting i think mum will come round although slowly you should pick up signs of mums recovery yes you will feel lost and bewildered i was its the only thing you can do is stay positive otherwise you will fall apart ive got the tee shirt one thing you could ask is do they have a neuro rehab unit they could send mum to but if they don't then the hospital will have neuro phyisos who will push mum to the best of her abilities and you have the joys of the tilt table to come that was a joy to behold seeing lin standing up instead of lying in bed queens deal with the crisis then pass mum onto people who will help her get whatever they can out of mum it is horrible but you have to learn to take one day at a time its going to be hard believe me but we will be here to support you your last paragraph says it all "mum seem to smile when we played some music " that is a small step in the right direction for mum if you can leave a tape or walkman or cd player with her then she can listen to her type of music all the time and you will get a smile a little more often yes its going to be a long haul but remember you are not alone you have my number and everyone on here is hoping for better news as the days go on chin up give me a call anytime take care regards to mum and dad and sister Edited July 28, 2010 by paul99 Quote Link to comment Share on other sites More sharing options...
Tina Posted July 28, 2010 Share Posted July 28, 2010 Hi Ash...wishing you all well....lovely to read your Mum smiled when you played music take care xx Quote Link to comment Share on other sites More sharing options...
Lin-lin Posted July 30, 2010 Share Posted July 30, 2010 Thank you for your update. It's always lovely to hear from you. It's difficult to always remain positive, I know. Sometimes however, it is allowable to let our emotions take over and have a good cry or a moment of frustration. This allows us to take stock and we find greater strength to deal with the next phase. I previously had a personality type that would keep everything in and I would always be the strong, stoical one; however I now appreciate that this doesn't always assist us and I now find a 'funny five minutes' always helps! As an outsider to your situation, I sense that you are handing this very well. Your feelings of anxiety are perfectly normal. I'm glad you are having support from your cousin. In situations like this, we want definite answers and timescales. I now appreciate that neurology is not an exact science. I know you just want your Mum back to normal and anything short of that is disappointing. However, in the context of something serious having happened to her; there is no present deterioration and she has been moved to a normal ward. She is facing in the right direction. If it's any consolation, when my cousin (who is a doctor) saw me in High Dependency a few hours after admittance, his clinical (but perhaps stressed) diagnosis is that I would not make it. I'm just sharing this so that you can appreciate the strides the human body can make, even though it looks initially bleak. The idea to play her music is fabulous and your Mum obviously responded well to it. Don't underestimate the value of your visits, I'm sure they are helping with your Mother's recovery as much as the medication. Take care Lynne Quote Link to comment Share on other sites More sharing options...
maggie Posted July 31, 2010 Share Posted July 31, 2010 Hi Ash good news regarding mum's progress.It is slow I know and you want to look into the future,but just know that mum can get through this. Keep talking to her she will hear you I am sure of it! Maggiexxx Quote Link to comment Share on other sites More sharing options...
Ash Posted July 31, 2010 Author Share Posted July 31, 2010 Evening all.. They have now moved my mum to her local hospital, The Whittington in Archway. She seems to have handled the move pretty well but had a slight temperature tonight. The nurses have said she seems to be more alert and certainly her head now moves more than it was doing which is a good sign. There are more smiles too, especially a really big one yesterday when one of her friends visited The physios, doctors etc will start assessing her on Monday so i guess that's going to be another step in the right direction. I was feeling a bit confused last time i posted but feel a bit better now the move has gone through. The ward seems nice enough and she has a lot less tubes and things. It's now the trachi and a feed and that's about it. They still do all the usual checks and things but she does seem relatively stable at the moment. It was nice reading your messages again after that and i will try and start to send a few pm's to people as i feel a bit guilty not doing so after you all take the time to read and reply to my posts. I can only say you don't know how much it has helped me reading all your replies and kind words and it's all coming from people who know so much more about this stuff than i do. You're all so inspirational and i've drawn real comfort from this at times when i've felt low and can't thank you all enough again Thanks and best wishes to all as always. Ash. Quote Link to comment Share on other sites More sharing options...
kempse Posted July 31, 2010 Share Posted July 31, 2010 Hi Ash, Haven't posted on your thread before but I have been following your story and it is good to hear your Mum has moved with little disruption. There are a lot of positive things that you have reported on - I hope the assessments go well on Monday - I am sure with the continued love and support of your family, your Mum will continue to do her best. Sarah Quote Link to comment Share on other sites More sharing options...
paul99 Posted August 1, 2010 Share Posted August 1, 2010 hi ash so pleased to hear the news that mum is now at the whittington i think you will mum improve quite a bit now she is in a normal ward i don't think it will be long before they cap mums Traci and it removed which will be another step in the right direction and you should be able to relax a little more good luck for mum next week will keep my eyes open for the updates as and when you post take care Quote Link to comment Share on other sites More sharing options...
Skippy Posted August 1, 2010 Share Posted August 1, 2010 Hi Ash Really pleased that your mum's move went well. As for feeling guilty about not replying to us all - don't even think about it hun. It's what we're all here for and it's good for us to be able to help another person through a very very hard time. You've already said thank you to us all for helping you through this, so please do not feel guilty. Right now you need to be concentrating on keeping yourself well and helping your mum through the remainder of her recovery. Take care and best wishes Quote Link to comment Share on other sites More sharing options...
maggie Posted August 1, 2010 Share Posted August 1, 2010 Hi Ash such good news that mum's move went well and hopefully you will see more improvements in the next week or so. I hope you are getting some rest and getting looked after too. So nice of you to think of us Ash but I agree with Sammi, much rather you concentrate on yourself and mum, all we want is for you both to be ok. So please don't feel guilty. Good that mum is smiling more. She will be so very proud of you. Big hugs xxx Quote Link to comment Share on other sites More sharing options...
JayKay Posted August 1, 2010 Share Posted August 1, 2010 Hi Ash! Lovely to hear that mum has been moved closer - it will be easier to visit, no doubt. And to hear that she's smiling too, that's great! I'm glad the forum has been helpful to you. I know how scary it is to have a loved one lying in a hospital bed, but you are coping fantastically well. Take care and I hope mum continues to improve beyond all your expectations!! Quote Link to comment Share on other sites More sharing options...
Lin-lin Posted August 4, 2010 Share Posted August 4, 2010 Hi Ash Just sending you and your Mum some well wishes. Don't worry at all about replying to us, we understand how busy and stressful a time it is. I'm glad the move to the new hospital went well and given it's closer, it will alleviate some logistical problems for visits. Things seem to be going in the right direction. Lynne Quote Link to comment Share on other sites More sharing options...
Ash Posted August 4, 2010 Author Share Posted August 4, 2010 (edited) Hi everyone, Thanks again for all your good wishes. Since the move Mum seems to be doing quite well They are now deflating the trachy twice a day and so far she's not suffering any adverse reactions. She had no oxygen at all today for a while and seemed to cope pretty well with that. Good news is her left arm and fingers now seem to have started moving!! That was pretty cool when i first saw that, it was like seeing a baby take their first steps or something lol She's having physio every day and now we're nearer home lots of her friends are popping in so there's a steady stream of visitors which seems to help her as she always smiles when she sees a familiar face. I hope all of you are doing well too and taking care of yourselves. I'm going to try and get to the gym tomorrow and i went for a run today, as i've always been into keeping fit but not really bothered with it for the last month. It didn't seem that important but seeing my mum improve a bit has made me feel a bit more like my old self. Take care all and i'll hope to have even more good news next time Ash. Edited August 4, 2010 by Ash Quote Link to comment Share on other sites More sharing options...
paul99 Posted August 5, 2010 Share Posted August 5, 2010 hi ash good news about mum beginning to move and that they are beginning the downsizing of mums traci just wait until they put a frenistrated traci in and you can hopefully hear mums voice or groan in lins case that will send the hackles up on your neck before they removed it completely my fingers are crossed for you all now comes the part where you want things to move even more quickly but remember its up to mum to make the running its nice she has friends popping in giving you a breather sorry i don't do running or gym work those days are over for me please give mum and family my regards and im looking forwards to your next posting take care ash Quote Link to comment Share on other sites More sharing options...
maggie Posted August 5, 2010 Share Posted August 5, 2010 :-DGood to hear things are getting better for you. You sound like you need that run.Go girl!Fingers crossed for more good news in your next post soon. Love Maggie xxx Quote Link to comment Share on other sites More sharing options...
Vivien Posted August 5, 2010 Share Posted August 5, 2010 Hi Ash, really pleased to hear that your mum is smiling at visitors and beginning to move, she is obviously making progress. I know that you wish it was quicker, but us SAH patients need to take our time Take care of yourself Vivien x Quote Link to comment Share on other sites More sharing options...
Ash Posted August 11, 2010 Author Share Posted August 11, 2010 Hi folks, Well it's been a few days since i updated you all..Mum is still stable and they are now deflating the cuff on her trachy for up to 4 hours at a time. She gets put in the chair twice a day for 2 hours at a time and she's now got some movement in her left arm from the fingers and elbow. Apparently today she tried to pull the feeding tube that's in her nose, which was a bit naughty. They put a new one in and they are giving her some extra fluids for something. I think she had some tummy troubles but it seems to be under control. She's had a speaking valve put in for 2 hours at a time but so far she hasn't said anything or tried to. My dad seems to be struggling with that and the sister asked me today to talk to him as they were a bit concerned he wasn't really understanding this process to well. He's quite old and this is all a bit frightening for him. He was very reliant on my mum to do things for him and seems to get confused and frustrated at the fact mum isn't responsive. I'm going to have to sit him down again and speak to him and make him understand again this is a very long term and slow recovery but it's hard for him to deal with. He just wants her to talk and come home so it's very difficult if i tell him that that no one can say when or even if that will happen. I prefer to remain positive at all times though and i know my mum would take that approach too. It was my sister's birthday today and she brought her one year old son into the hospital to see mum for the first time. That was quite an event!! He had all the nurses queing up to cuddle him Mum seemed to love seeing him so although he is very young i think it was a good idea. It made me sad at first to see mum not able to play with him as he's her first grandchild and she adores him, but then seeing her smile when she saw his little face was nice He wasn't too noisy either lol I've asked to speak with a doctor about things as i haven't had the chance to do that since my mum moved hospitals and they are going to arrange that. We'll know more then and i'll have a bit better idea of what is going on. Hope you're all doing well and i'll speak to you all soon Ash Quote Link to comment Share on other sites More sharing options...
paul99 Posted August 11, 2010 Share Posted August 11, 2010 hi ash good news mate about mum and the traci it will take mum some time to realize that she is able to try and talk you are right about it being a long haul it wont be long before they remove the traci completely if she is able to go up to 12 hours with it capped off its not the end of the world if they decide to leave it in long term mum when she realizes she can make noises and hopefully begin to talk im pleased about the movement as well this i reckon will improve over the long term i understand about dad and his feelings if i can help give me a call wish your sister a happy birthday from us and don't forget to write all your questions down before you see the dr then you wont forget anything but his answers may bring up other questions through a smile on anyones face does mean so much take care ash regards to mum Quote Link to comment Share on other sites More sharing options...
Ash Posted August 19, 2010 Author Share Posted August 19, 2010 Hi guys, Sorry it's been a while again since i posted but had a few things going on. Mum has finally had her trachy removed Have to say that's a huge relief and she's apparently coping well without it. They have even tried to feed her some yogurt a couple of times to assess her swallow! She can move her left hand and arm from the elbow and there is some movement in her right arm fingers now which is good as there was previously nothing on that side. So far she hasn't been able to speak at all and is working with the speech therapist on that. She does nod her head as if to say yes or no to questions but i'm not sure if she's understanding them. They have also said they will be looking to transfer her again to a specialist brain injury rehab unit tho not sure where. Northwick Park is apparently the favoured choice. So things are a bit better I'm just waiting for the day she manages to say a word, i'll probably do a cartwheel or something lol. Hope you're all taking care of yourselves too and best wishes to everyone Ash Quote Link to comment Share on other sites More sharing options...
paul99 Posted August 20, 2010 Share Posted August 20, 2010 ash don't worry about posting as things will move slowly im finding that with lin im really chuffed that mums had traci removed its going to take time for her to realize that she can now talk when she gets all the wiring repaired so to speak very pleased she is beginning to move her arm slowly catchee monkey northwick park is brilliant mum will have intensive treatment they will get as much out of mum as possible but it will be stressing for mum frustration more than anything as they start to work her and stimulate her good luck i just hope your taking time for yourself hope dad is ok and beginning to understand how things will progress take care regards to everyone Quote Link to comment Share on other sites More sharing options...
Lin-lin Posted August 21, 2010 Share Posted August 21, 2010 Glad things appear to be healing. Thinking of you. Hope more improvements will be witnessed over the next few weeks. Lynne Quote Link to comment Share on other sites More sharing options...
maggie Posted August 21, 2010 Share Posted August 21, 2010 Hi Ash,good news about mum,hope to hear more good news soon as am sure you would too. Hope you are looking after yourself as well,it's been traumatic for you and I hope you are getting plenty rest. Best wishes for mum and you and your family,hope mum speaks very soon can you cartwheel? Best get practising:crazy: Quote Link to comment Share on other sites More sharing options...
Ash Posted August 31, 2010 Author Share Posted August 31, 2010 Hey all..thanks for the kind words. I know these updates are getting a bit more sporadic but i haven't forgotten you all!! Just been a bit busy and i'm trying to get back to work so things are getting a bit hectic. Mum seems to be doing ok and she has started eating puree now. She even managed to feed herself today which was nice No talking yet and she's still not got a lot of mobility on her right side or legs but at last the trachi has all gone and she's breathing on her own now and apparently comfortable. Not sure when but they are looking to move her to a rehab centre asap...probably once the feed has been finally removed. I think she's at a stage where she needs some really intensive work now to try and get things moving. it's defo going to be a long slow journey but we'll hopefully get there. She's always smiling tho and laughing so i take a lot of comfort in that. I'll try and be back a little quicker next time but love and best wishes to you all Ash Quote Link to comment Share on other sites More sharing options...
kempse Posted August 31, 2010 Share Posted August 31, 2010 Hi Ash, It's understandable that life is so hectic at the moment, so it is nice that you have even managed to post an update on here at all. Good news that Mum has managed to feed herself. The smiles and laughs from her will be most welcome - I hope the good progress continues. Best wishes, Sarah Quote Link to comment Share on other sites More sharing options...
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