karen lloyd Posted September 30, 2008 Share Posted September 30, 2008 Hi, have just found this great site...am in Australia and not enough info to be found. I will try to keep as brief as poss. My mother had a grade 5 subarachnoid haemorrhage on 29/8/08. She went into seizure and fitted and lost consciousness. We were told that she had a 10% chance of survival. She was transfered to an ICU and when we went to see her the next day, she recognised us and whispered to us even with breathing tubes in. She was coiled that day. Went into vasospasm 2 days later which was fixed with balloon catheter. Suffered massive lung infection. Has had a trachy put in. She was in ICU for 17 days and then was transfered to HDU where she still is. Since then my Mum has been extremely agitated, hardly sleeping, very confused, she is now on a cpap machine and on the few times she as been nearly cognitive speaks,(even though we cannot understand what she is saying because of the trachy) laughs and smiles etc. She has also had a blood clot in her lung and been put on heparin to prevent further clots. My sister and I would be very grateful for any information regarding the chances of Mum ever coming back to us again. thank you karen Quote Link to comment Share on other sites More sharing options...
Skippy Posted September 30, 2008 Share Posted September 30, 2008 Hey Karen So sorry to hear about your mum. It sounds as though she's doing pretty well under the circumstances. My only adive to you is to stay positive. I always feel that the Docs have to give you the worse case scenario to protect their own backs. It's very early days yet in your mum's recovery to really be sure of anything, considering all the complications she's had. Keep visiting her and this will let her know that you're there and that she's not alone - being agitated and confused isn't uncommon after a SAH. Try to soothe her and just let her know that you're there and that you love her. I'm sure there are people on here with more experience of being a carer than me, I'm a sufferer. Could you give us more details on your mum? How old she is etc. Stay positive and stay in touch here - it will be a wealth of knowledge and support to you all. My thoughts are with you. Love Sami xxx Quote Link to comment Share on other sites More sharing options...
Karen Posted September 30, 2008 Share Posted September 30, 2008 Hi Karen, I agree with Sami ..... it would also be good to know how old your Mum is? We have a few carers on this website and hopefully, they'll be able to support you as well..... like Sami, I'm a sufferer. Thinking of you.....xx Quote Link to comment Share on other sites More sharing options...
Louise Posted September 30, 2008 Share Posted September 30, 2008 Hi there Welcome to the site, I agree with Sami all you can do is be there and chat to your Mum even if she cant answer..... and most of all look after Yourself it your strengh she needs so you have to keep your strengh up.... take care Louise.xx Quote Link to comment Share on other sites More sharing options...
bogbrush Posted September 30, 2008 Share Posted September 30, 2008 Hi Welcome to behindthegray. I can't really add much more that hasn't already been said, except stay positive, it's early days and these things can take time, as many here will testify. You will find lots of support here. I'm not a carer or a sufferer ... more a survivor Regards Keith Quote Link to comment Share on other sites More sharing options...
Guest ElaineW Posted September 30, 2008 Share Posted September 30, 2008 Hi Karen - I am a carer and I must say these last few months have been very hard. My mum was 75 when she had her SAH but five months on now she is doing remarkably well, despite a very poor prognosis. She also had pneumonia to complicate matters and her outcome looked pretty bleak at times. So the best thing I can advise you is never give up hope although I expect you are finding that pretty damn hard at the moment. Another good bit of advice is that there seem to be more downs than up's during the hospital stay and I used to get very down if mum had improved one day then was worse the next but it is all part and parcel of a SAH. You can read my mum's story on this site (her name is Maggie). My mum was in hosp for almost two months but despite all odds she is living alone on her own again and I feel so proud of her. You do have a long haul in front of you but she has come this far so I would imagine she will get through this. Keep talking to her thought often she will be probably be asleep and try not to get too exasperated with communication, my mum had a trache for a month and she used to get so annoyed with me when I couldn't understand her. Anything more I can advise on, just ask. Elaine Quote Link to comment Share on other sites More sharing options...
tennissmithy Posted September 30, 2008 Share Posted September 30, 2008 Hi Karen Welcome to BTG. Again I can't comment as a carer because I am the one who survived the SAH. All I can say is stay positive. There are carers on here who will no doubt be able to help. This website is full od support, advice and love. Love and hugs Laura xx Quote Link to comment Share on other sites More sharing options...
jess Posted September 30, 2008 Share Posted September 30, 2008 Hi there welcome to BTG stay positive for her I am sure everything will be ok. And make sure that you look after yourselves aswell anything you want to know just ask. Jess.xxx Quote Link to comment Share on other sites More sharing options...
Janet Posted September 30, 2008 Share Posted September 30, 2008 Hi Karen Sorry to hear about your Mum I also can't offer any advice as a carer as I also had the SAH. My thoughts and prayers are with you. Stay positive and remember to look after yourself as well. Janet x Quote Link to comment Share on other sites More sharing options...
karen lloyd Posted October 1, 2008 Author Share Posted October 1, 2008 Thankyou so much everyone for your support. Mum is 72 years young, a very fit and active lady except for macular degeneration. Mum was a carer all of her life she looked after my great grandmother who was bedridden after a stroke for eighteen years. She also looked after my grandmother who had a stroke, my father that suffered with cancer and my Uncle Bob as well. It is the one thing she was absolutely petrified of happening to her as she knew the outcomes. It is like everyone says....one step forward and a couple of steps back. It is such a frustrating time as we feel like we are living in limbo and none of the doctors or nurses can really tell us anything. We visit Mum every day even though she is in a hospital nearly an hour away. Its so hard to come to terms with, as she was our heart and soul, our everything. I'm really glad I found this sight as it gives so much more information and support that any other site etc I have visited. Thanks again, regards Karen Quote Link to comment Share on other sites More sharing options...
Karen Posted October 1, 2008 Share Posted October 1, 2008 Hi Karen, Yes, recovery can be like a rollercoaster ride ......and your Mum is dealing with a few complications too .....she sounds as though she's had to be a strong lady with what she's endured in her personal life ..... hopefully that will help her fight. Try to keep positive and at least she's trying to converse with you, which can only be a good thing. As you can see from Elaine's Mum, who is of a similar age, survival is possible. Hope that things are better for you today. x Quote Link to comment Share on other sites More sharing options...
Tina Posted October 1, 2008 Share Posted October 1, 2008 Hi Karen I just wanted to say my thoughts and prayers are with you.....i am also a survivor......thinking of you and your Mum, stay positive, Take care, love Tinaxx Quote Link to comment Share on other sites More sharing options...
Guest ElaineW Posted October 1, 2008 Share Posted October 1, 2008 Now it is time for your mum to get some TLC but obviously not in the circumstances one would wish. My mum too cared for my dad who had dementia and life can be so cruel, it just seems so unfair. Keep visiting this site - its like a best friend who is always there at times of need. Elaine Quote Link to comment Share on other sites More sharing options...
karen lloyd Posted October 4, 2008 Author Share Posted October 4, 2008 HI everyone, thank you so much for all of your lovely comments. Just wanted to update everyone. We had a meeting with the doctor the day before yesterday which went quite well.....Even though at this stage we still don't know the damage done mentally and we won't know that until the trachy comes out......which may be soon... she is doing really well...When we went to the meeting we were suprised to be told that she had been off the cpap machine for 4 1/2 hours that day....previously she had struggled at 1/2 hour..As of today she has been off the machine all day....and hopefully by Monday will be off all night as well. this is just a huge step.....Yesterday and the day before she was so tired when we went to see her but today was like a completely different person...She was so alert and understood what we were saying it was quite amazing...Still very frustrating for both of us as we cannot understand (bar a few easy words) what she is saying....So today was a really good day...I know that tomorrow may not be as good but we will take each day as it comes.. Also the nurse asked her today if she would like her catheter taken out and I can tell you I have not seen such an animated response as she nodded quite gleefully. Like I said today was a good one.....hopefully we will have a few more....Thanks again everyone for your support.. Quote Link to comment Share on other sites More sharing options...
Karen Posted October 4, 2008 Share Posted October 4, 2008 Hi Karen, Great news about your Mum .... sometimes it seems like baby steps at first, but they all eventually add up. I can also remember being very glad to have the catheter removed .... it makes you feel so restricted when you try to move and not very comfortable. It was great to eventually be able to walk with the drip stand to the loo ..... even though I was horrendously wobbly and had to have a couple of nurses to support me as well. It's amazing how weak you feel. Really pleased for you and hope that she continues to improve. Quote Link to comment Share on other sites More sharing options...
jess Posted October 5, 2008 Share Posted October 5, 2008 Hi Karen pleased to hear your mum had a good day hope they stay good. Jess.xxx Quote Link to comment Share on other sites More sharing options...
Guest ElaineW Posted October 12, 2008 Share Posted October 12, 2008 This brings back memories for me - the catheter coming out that was heaven for my mum and when the trache came out mum came on leaps and bounds. The best advice I can give is never expect two days to be the same, I found it so hard when a good day was followed by a bad. Has your mum been sat in a chair yet, is she able to communicate. Please keep us updated. Elaine Quote Link to comment Share on other sites More sharing options...
karen lloyd Posted October 13, 2008 Author Share Posted October 13, 2008 Hi Everyone, just thought I would give you a bit of an update. Mum unfortunately had to have the catheter reinserted as she wasn't using her muscles and urinating and they kept having to drain her bladder which was very stressful for her. They have been deflating the cuff on her trachy 4 or five times a day to try and ween her off. I haven't been there myself while they have been doing this but my sister was there on Saturday when they had it deflated and Lisa was trying to get her to talk....So she said to Mum "say hello mum" and mum said it. Lisa then asked her if she had anything to say to her......hopefully something really deep and meaningful......She said "stop waking me up" which was just mum. Each time I have been up there for the last week or so she has been sound asleep. She is sitting up in the chair alot but obviously really tiring out. So it's some good news, even if I haven't seen it and she needs all the sleep she can get as I don't think she slept at all in the first couple of weeks. cheers everyone...... Quote Link to comment Share on other sites More sharing options...
Skippy Posted October 13, 2008 Share Posted October 13, 2008 Hi Karen Sounds like some good news for your mum - even a slight improvement or response is so uplifting. Glad that you're keeping us updated. Take care Sami xxx Quote Link to comment Share on other sites More sharing options...
tennissmithy Posted October 13, 2008 Share Posted October 13, 2008 Hi Karen, Some news that is positive xx Well done xx Love and hugs Laura xx Quote Link to comment Share on other sites More sharing options...
Guest ElaineW Posted October 13, 2008 Share Posted October 13, 2008 Yes, really good signs - just what my mum was like, sounds like your mum is heading in the right direction. Lovely news. Elaine Quote Link to comment Share on other sites More sharing options...
karen lloyd Posted October 28, 2008 Author Share Posted October 28, 2008 hi everyone will update tomorrow have tried twice to post update but keeps telling me this page cannot be displayed....and have written long story twice now and lost it so will have another go tomorrow.' cheers karen Quote Link to comment Share on other sites More sharing options...
Tina Posted October 28, 2008 Share Posted October 28, 2008 Karen the same thing happened to me...must be gremlins....look forward to your update...take care Love Tinaxx Quote Link to comment Share on other sites More sharing options...
karen lloyd Posted October 28, 2008 Author Share Posted October 28, 2008 Hi everyone, third time lucky here.....After 10 long weeks mum finally had her trachy removed 2 days ago. I was there when it was removed and was very anxious as all the communication that we have had over the last 10 weeks is some words we have been able to make out from reading her lips.(They had to stop deflation on her trachy as she had another lung infection.) Well as soon as she had the trachy out she has starting talking and I don't think she has stopped since. Everyone on the ward, came to visit her and have a chat, I think that all of them have looked after her at some stage. Now she is not 100 per cent and has come out with some very weird and wonderful comments...ie that she was going to marry her cat.....but hey after 10 weeks of no communication goodness knows what has been swirling around in that head of hers. She is still quite confused re some memories etc but amazingly remembers quite a lot. She knows all her family, her date of birth, where she is etc. So everything is now crossed hoping that with some cognitive excercises she will be able to remember a lot more. Yesterday my sister was with her and apparently had her in stitches the whole time she was there...obviousy has'nt lost her sense of humor either. Lisa fed her some pureed veges and meat which she tolerated very well . The physio also got her up on a frame and amazingly she walked for 1 metre....apparently the nurses nearly fell over...this is after 10 weeks of lying in a hospital bed. The whole of the nursing staff are calling her the miracle lady as they have never seen anyone recover this well from a grade 5 SAH .....We still have a very long way ahead of us but are hoping at some stage to be able to bring her home. I really wanted to let everyone know as I come onto this site nearly every day to catch up on all that is happening, I'm just not a big poster... I hope that I have not upset anyone that is still going through the road to recovery as I know what a rocky and emotional road that is. But never ever give up hope...We were given a very bad prognosis for mum but it just goes to show that miracles do happen with love and support anything is possible. My thoughts and prayers are with everyone. karen Quote Link to comment Share on other sites More sharing options...
bogbrush Posted October 29, 2008 Share Posted October 29, 2008 Karen, don't think you are upsetting anyone. We love good news here. It's great to hear you're finally getting your Mum back. Miracle lady indeed Regards Keith Quote Link to comment Share on other sites More sharing options...
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