rod123 Posted August 31, 2009 Share Posted August 31, 2009 Hi Bessie I know exactly how you feel, being a carer myself i felt our destiny was in every body elses hands and i had no control over anything, and that is unfortunatley how it is, the doctors have their job to do and you must put your faith in them, but everybody have their job to do and your's will come later and then you'll think theres so much to do,the worry don't go away striaght away but it gets easier to live with as time goes on so hang on in there and good luck Rod Quote Link to comment Share on other sites More sharing options...
bessie Posted September 2, 2009 Author Share Posted September 2, 2009 Thank you all again for your comments of support - it does help. Especially as I had never heard of an SAH before and it all happened to Mum out of the blue. The problem with my Mum now is this ventriculitis infection. As I mentioned, we were told by the doctor, not the consultant but the doctor who is always around in HDU, that the ventriculitis had gone but her last lumber puncture tests showed it hadn't. So this is what she is fighting now. She is very quiet at the moment and when you ask her questions and try and talk to her she just stares at you? She was trying to sing the other day. Hopefully when I go in to see her tomorrow she may be a little brighter? Quote Link to comment Share on other sites More sharing options...
Tina Posted September 2, 2009 Share Posted September 2, 2009 Hi I really hope when you see your Mum that she will be brighter and improving....take care love Tina xx Quote Link to comment Share on other sites More sharing options...
myratas Posted September 2, 2009 Share Posted September 2, 2009 Hi I hope and pray that your mum improves, I know it can be a worrying time for you too, have hope and everything will turn out fine. Take care Quote Link to comment Share on other sites More sharing options...
tennissmithy Posted September 2, 2009 Share Posted September 2, 2009 My fingers are crossed for you all Love and hugs Laura xx Quote Link to comment Share on other sites More sharing options...
paul99 Posted September 3, 2009 Share Posted September 3, 2009 (edited) hi sarah please dont worry to much the antibiotics work for days aftr they stop giving them just trust the drs maybe mums got the hump lol it cant be fun lying there talk to her and try and make her laugh tak care sweetheart thinking of you and mum Edited September 3, 2009 by paul99 spelling Quote Link to comment Share on other sites More sharing options...
bessie Posted September 4, 2009 Author Share Posted September 4, 2009 They have moved my Mum from HDU to a general ward - we questioned this as she is still not eating and drinking for herself and cannot get up and go to the toilet (she still has the catheter for that). She is still being treated for ventriculitis and is sleeping all day but does wake up at night. The doctor said they can do exactly the same treatments up there, but the nurse said they need the bed space in HDU for patients from another hospital. What a shock it was to have mum go from HDU to a general ward. When they took her temperature she never had her notes and the nurse wrote it on a tissue?? This has made me sick to my stomach and I am so scared. Sorry to go on but I have to vent this somewhere and I cannot keep going on at my dad. Quote Link to comment Share on other sites More sharing options...
adam Posted September 4, 2009 Share Posted September 4, 2009 Hi Bessie Please don't worry, I can understand where you are coming from, my wife tells me she had the same concerns whilst I was in hospital. To give you the details as the surgeons were waking me up following my coiling, I suffered a stroke and subsequent hemi-paresis (paralysed down one side), they put me back under and managed to fix that. I was then sent to recovery where I spent several hours before being sent to ICU for a few days and then onto HDU before being transferred to the general ward. Each time I was moved down a level of care, my wife was very concerned and thought I wasn't ready for it; I didn't eat anything for at least 10 days, I was on a drip for fluids and meds and was catheterised until I had been on the general ward for several days. But I made it and so will your Mum What I am trying to say is that it is natural for you to be worried, but generally (not always) the medical staff know what they are doing, they have seen it all before. Once we have come through the initial bleed and surgery, providing there is no vaso-spasm it is just a matter of supportive neuro care with a large dollop of TLC from your relatives. As for not having records to hand to record your mums temperature, well it is the NHS a government bureauracracy, they are the best in the world at losing files . Don't worry about your Mum, odds on she won't even remember her stay in hospital, and will rely on you and your Dad to fill in the blanks for her....believe me it's really frustrating not knowing what happened to you during that period! I hope this helps, take what re-assurance you can get, talk to the medics, ask us..we've been there! Take care, look after yourself, your Dad, and be there for your Mum..she will need you, not just while she is in hospital but for quite some time to come... Best wishes Adam Quote Link to comment Share on other sites More sharing options...
bessie Posted September 16, 2009 Author Share Posted September 16, 2009 Hello, I haven't posted for a while but my Mum is worse and has been transferred back to critical care. She had to be given blood as her blood pressure was so low. Her temperature is up and down between 38 and 39 degrees. She is unconscious due to some sort of infection? She has had all sorts of tests and scans and everything is coming back as clear and normal? According to the doctors the ventriculitis has cleared up and they are stumped. She is having an ultrasound tomorrow to check her stomach to see if there is anything wrong with that. One thing I noticed is that the inside of her hands smell of yeast and she has a blood blister on the calf of her leg from her thrombosis/embolism bed stockings, they kept rolling down and were just left to cut into her when she was in the general ward. What she went in for 7 weeks ago has been sorted but now her body is having to fight some unknown infection and we just have to wait. Its heartbreaking and frustrating. Quote Link to comment Share on other sites More sharing options...
rod123 Posted September 16, 2009 Share Posted September 16, 2009 Hi bessie sorry to hear things are hard going at the moment but i'm sure your mum is in good hands you must trust in the doctors and i know that is not always easy but they really do know what they are doing so lets hope tomorrow is a better day and they find a few answers to mums problem keep us informed and stay strong good luck Rod Quote Link to comment Share on other sites More sharing options...
bessie Posted September 23, 2009 Author Share Posted September 23, 2009 (edited) Its really not looking too good for my Mum at the moment. She is still unconscious and has a serious and agressive infection. Having first not known why she was like this the doctors are now saying its to do with the ventriculitis infection which has been ongoing for 6 weeks now. She is also having to have a suction tube put regularly down her throat to suction off mucas, however its coming out red like blood? This must be the worst time of me and my families life. I have a fear that the doctors don't really know what else to do. I fear the worst but scared of saying it. I don't know what to do. Edited September 23, 2009 by bessie spelling Quote Link to comment Share on other sites More sharing options...
Karen Posted September 23, 2009 Share Posted September 23, 2009 Hi Bessie, How worrying for you all and I'm so sorry ...... I would ask the Doctor/Nurse why there's blood showing in the mucus? You could always try contacting one of the neuroscience nurses at the Brain and Spine Foundation helpline, it's a free service and they would perhaps be able to help answer your question? ..... http://brainandspine.org.uk/helpline/index.html Quote Link to comment Share on other sites More sharing options...
Cal Posted September 23, 2009 Share Posted September 23, 2009 Hi Bessie, My thoughts and prayers are with you and your family. Take care. Cal XXXX Quote Link to comment Share on other sites More sharing options...
rod123 Posted September 23, 2009 Share Posted September 23, 2009 Hi, bessie sorry to hear that things are still not going well for your mum , stay positive, stay strong and good luck to you all, Rod Quote Link to comment Share on other sites More sharing options...
michelle C Posted September 23, 2009 Share Posted September 23, 2009 So sorry Bessie that things are not going well at the moment, please try and stay positive my thought and prayers are being sent your way, take care. Michelle c Quote Link to comment Share on other sites More sharing options...
perrycornish Posted September 23, 2009 Share Posted September 23, 2009 Bessie, thinking about you and your family and your Mum so much. Trust in the experts and keep talking to us Quote Link to comment Share on other sites More sharing options...
melbury Posted September 24, 2009 Share Posted September 24, 2009 So sorry Bessie, please try and keep having positive thoughts. All the best, Mel x Quote Link to comment Share on other sites More sharing options...
Neil Posted September 25, 2009 Share Posted September 25, 2009 Bessie, as Perry says please keep talking to us. It's not often that I pray but I'm saying one for your Mum and for you tonight. Quote Link to comment Share on other sites More sharing options...
Skippy Posted September 26, 2009 Share Posted September 26, 2009 Hey hun My thoughts and prayers are with you. We're here for you hun Quote Link to comment Share on other sites More sharing options...
bessie Posted November 6, 2009 Author Share Posted November 6, 2009 Hello all Its been a while since I posted on here but my Mum is out of Kings College Hospital and in our local Hospital. She is eating and drinking on her own now but still is bed bound and has severe short term memory loss and confusion. She gets very angry and frustrated at times (can't blame her) but does have good days. We were told by the ward manager at Kings that she would stay at the local hospital for general nursing and then go on to a Neuro Rehabilitation centre at a West Kent hospital (which Kings referred her to). We were told they were just waiting for a bed to become available. BUT .... when the physio lady came to assess my Mum yesterday we were told she may not be suitable as she is still bed bound and they don't have a nursing team to take care of her needs on that side. I thought the whole point of rehabilitation was to get her up and walking. We won't know until late next week if they will except her. They also suggested she was too old and that only younger adults have rehab there. If they don't except her, she is stuck in the local hospitals stroke unit getting acute physio and speech therapy 2 or 3 times a week. At this rate she will be in hospital for months. Its very frustrating because its such a slow process. I want her up and walking so she is able to at least go to the toilet on her own. But at this rate that is weeks off. Quote Link to comment Share on other sites More sharing options...
Tina Posted November 6, 2009 Share Posted November 6, 2009 Hi Bessie....so frustrating for you.....i think as karen has said in another post...he who shouts loudest.....i dont know who would be the best to speak to, but i am sure someone else on here will be able to advise you. Really hope you can get something sorted for your Mum. Take care Love Tina xx Quote Link to comment Share on other sites More sharing options...
rod123 Posted November 6, 2009 Share Posted November 6, 2009 Hi Bessie i think Tina is right she who shouts loudest, i think you just have to keep on at them and as frustating as that sound i too was told that is the only way Perhaps you could try someone like templehead, talk to them and they might speak on your behalf or able to give you advice on how you can get the help your mum needs,Good luck to you both Rod Quote Link to comment Share on other sites More sharing options...
Liz D Posted November 6, 2009 Share Posted November 6, 2009 Hi Bessie What a time your mother and family have been through. I can understand your frustration but recovery is a slow procedure and for everyone it's different. I had my SAH in Feb 09. I had very little problems, other patients were surprised when they found out what had happened. I was dishcarged home 7 days after my procedure. I was warned that things may change once home as in hospital everything was being done for me. Boy were they right! It took weeks before I could even stand up in the shower, I couldn't get my left hand to grab door handles and I forgot how to go down stairs (I went down on my bottom). It's now 9 months on and only now will my GP discuss returning to work. My GP was great. He explained that my brain was relearning how to do things,either by repairing old paths or making new ones. He said even when you have what seems like setbacks your still moving forward in other areas. The brain dictates the rate of recovery and if it's had enough it slows down, has a rest and then it starts again. Your mother is a fighter, look at what she's been through. I was a secretary for the Department for the Elderly in our local general hospital. This included the Stroke Ward. Don't be too upset at your mother being here. When I thought I was gong to be returned to my local hospital this is the ward I wanted to go to because of the different disciplines that come to the ward each day. If I were you I would speak to the consultant looking after your mother. Ask the ward sister when does he do his rounds and tell the sister that you would like to speak with him. Tell the consultant how you are feeling and what your worries are. Write down what you want to ask so that you don't forget to ask all your questions. Sometimes even speaking to the nurse that looks after your mother each day can give you an insight into how she's doing. My thoughts are with your mother, you and your family. I remember how scary this was for my family. Wishing you the best Liz D Quote Link to comment Share on other sites More sharing options...
Karen Posted November 6, 2009 Share Posted November 6, 2009 Hi Bessie, Unfortunately, I think that it's a case of keep pushing for it ..... Is it worth giving the Consultant at Kings a call, to air your concerns ....as it was they who made the referral for rehab? Quote Link to comment Share on other sites More sharing options...
Louise Posted November 6, 2009 Share Posted November 6, 2009 sadly I think it is only those that are pushy that things get done & this shouldnt be the case at all...... rehab is constant physio its frustrating when if she's not getting that, how can she be anything else but bed bound, sorry I mean your Mum:roll: Quote Link to comment Share on other sites More sharing options...
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