Dune2014

Thanks Daffodil, just to know that there is someone who is willing to listen when you think your on your own is empowering. I didn't put the link to the blog in my post, it's http://www.chrisomalley.co.uk/ many thanks Chris x

Hi all, we are now 19 months on since Annie’s SAH and we are still on our journey to our new normal. Annie was on a Kepra reduction but seizures interrupted the reduction and Annie is back on the full dose again. For those who dont know Annie, her SAH left her quadriplegic and I am now her full time carer. Annie is still Annie and her sence of humour and intellect remains intact. It has been quite a journey so far and we have eventually got all the equipment we need, from special turning sheets,various slings, ceiling hoist and an F1 powered wheelchair. All I need now is an extra room to keep them all in. I would like to thank Behindthegray for keeping me focused and strong throughout those early days where negativity and helplessness ruled the day and for assuring me that all being well we would get there. Finally I would like to promote my blog again. I hope that it will help and inspire others who like me struggled through the early days. Please share with others and keep smiling. Chris X http://www.chrisomalley.co.uk/

Hi,Its been a while since my last visit so for those who are following Annie’s progress and the family's journey I would like to give you an update. After announcing the publication of the recent blog update, "Understanding Annies Brain" Annie was taken ill again. We are not sure what happened to her yesterday, she was fine in the morning but in the afternoon she fell into a deep sleep and couldn't be roused. When I was finally able to get her to come to she didn't know who I was, who our children were or where she was. This was very traumatic and upsetting. I phoned for an ambulance and Annie was taken to hospital. After another scan, ex rays and blood tests no conclusion to this extreme loss of memory has been given. However after a short while Annies memory and disorientation has come back leaving only tiredness and a little confusion. Its strange that I chose to discuss the subject of Annis brain and this happened at the same time as posting. We are now the proud owners of a ceiling hoist which will make things easier for Annie and me. Please feel free to visit and comment on the blog at www.chrisomalley.co.uk Cheers Chris x

Hi Win143, Annie is almost quadriplegic. She has no core and she can't move her legs on command. However when she stretches, yawns, laughs and sneezes the leg and feet move. It's an initiation problem I think. We live in hope as does my Annie? Cheers Chris x

Hi, well Annie is home and we are getting a routine together, Annie is putting on weight which I suppose isn't a bad thing. But she is aware of the increase and she isn't happy. There are also issues in relation to turning and hoisting etc and excoriation, especially in warm weather. I have approached our GP who just said diet but I feel its a little different when you are unable to move and your life is spent in a chair of bed. I'm not looking for advice but I am looking for pointers if anyone has any. You can read about Annies progress on my blog at www.chrisomalley.co.uk Cheers Chris x

Annie has had a pretty good week and I have been able to go fishing for an hour. It’s funny, I have been lectured this week by my wonderful children. If Jes, Sarah or Andy are reading this, I’m not complaining just making a statement. On Thursday Annie went to an Activity Centre. She left at 10 am and returned home at 8 pm, again I found myself thumb twiddling. I knew that I could go fishing but there was something inside saying you should be doing something more productive so I went shopping. Then I found myself with time to waste from 3 o’clock to 8 o’clock so I did more washing and tidying. What held me back from using the time I had on Thursday. Guilt, yes guilt, Sorry to stop there, you can read more on my blog at www.chrisomalley.co.uk

As usual your comments are fresh and empowering to both Annie and I. I hope the blog will help and in a way give a true insight into our journey. The blog has been updated today. I hope to be able to update daily basis. Big hugs to you all. Chris x

Hi to all on BTG, it's been a while since my last post so I just wanted to say that Annie is now home. She was away from the family home for 13 months. Annie has come on leaps and bounds since that dreadful day in January 2014. She still gets confused and disorientated at times but its so nice to wake up by her side, even if the profile bed she has sounds like there is a blue whale in the same room. BTG was a great support during those traumatic days and you helped me through the start of the journey. I am now Annies full time carer which is great as were joined at the hip before her SAH. I have also started a blog which I hope will strike a chord with sufferer's and carers alike. Please feel free to visit and leave your replies. I hope that other newly fledged carers will take a peek as it explains a families journey to establish a NEW NORMAL as we call it. I would like to say thank you again to the people who recognised the turmoil I was going through during the first 6 months following Annies SAH, without you the journey may never have started. Chris x I have messaged BTG Admin who have agreed to let me put my link on the BTG Forums. The link ishttp://www.chrisomalley.co.uk/

Many thanks for the feedback.i realise that the members are not medically qualified to advise but the realisation that what Annie is witnessing is witnessed by others gives me a well needed lift. When you love a person so much that any changes from what is now our new normal impacts upon our positivity. Thankyou for the added strength and the empowerment to keep fighting and the will to reach the finishing line. Chris

Firstly things have hectic, but nice to be back on line. Annie is continuing her rehab in a Supported living placement attached to a Residential Care Home. Her condition remains the same, she is still hoisted and in her wheelchair. The environment where she is now is great and the stimulus she gets is brilliant. There have been some small improvements cognitively and Annie has started to initiate conversation and assistance. Annie had her Supra pubic catheter fitted 4 weeks ago. (Here is where I need some feedback) Since the procedure Annie has had 3 episodes where she can't be roused, as if in a deep sleep. She has no responses to pain and no verbal responce the episodes last between 3 mins and 6 mins. When she regains awareness she is a little confused but aware of her Suroundings. On two occasions she has complained of headache, presure at the back of her eyes and feeling sick. Each time Annie was taken to hospital, however no reason for these episodes has been given. Annie had a scan following the first one and all was good in comparison to previous scans. Shunt working fine. They referred to a previous EEG done in August which showed no Epileptic signs. Has anyone witnessed this type of episode and what was the outcome. I hope that Annie will be home with me before Christmas as we now have an adapted property but these episodes are a cause of anxiety and reassurance goes a long way to maintaining a positive attitude. Here's hoping you are all well. Chris

Thanks Penny, your words are always encouraging and empowering.

In my last post Decisions, decisions, decisions, I mentioned Annies discharge to a care home for 3 months rehab, well the care home manager didn't turn up to assess Annie but phoned to say that because we are still waiting for an adapted property they didn't want to commit to taking Annie in case they were left holding the baby so to speak after the 3 months. Now the ward manager has taken it to the chief executive in the form of a complaint saying it an interrupted discharge. This leaves me feeling that Annie is Just a body on a bed and no one wants the care responsibility. There are still things outstanding, Angiogram MRI, Super pubic catheter and EEG. I am prepared to challenge the NHS however is it right to under the circumstances and am I over reacting. Chris

Well Annie has had her continuous care agreed. The decision about her discharge has it seems been made as we are meeting with a Care Home manager on Friday. Although we are waiting for an adapted property, it looks like they want Annie to go there in the interim, max of three months. I made her a promise that this wouldn't happen but it seems it may be our only option. I have been told that Annie is to have a EEG, an angiogram and a super pubic catheter fitted and this can be done as a day patient. Decisions, decisions, decisions. It's not easy is it. Her confusion and delusions appear to be caused by temporal lobe epilepsy hence the EEG, plus a urine infection due to catheterisation. Has anyone had any experience of reflexology and SAH. Chris

Hi Welshben31, yes Swansea born and raised, all we need naw is for Adapt to find us a place to live. They are next on the hit list.

I would like to give big thanks to penny and the group who replied to my cry for help. Today fuelled by the positive attitude of the responses I had, I set out on my daily visiting routine at the rehab. Today Annie was quiet and a little withdrawn, the delusions were very suppressed as was her confusion. Penny I took this opportunity to be firm in discussing Annie with the lead Nurse and the Neuro Psychologist. As a result they are bringing in a Nurse Specialist who deals with burns, as they feel the burn is deeper than first thought. They have stepped up the physio, put in place a new toileting regime and checking for a UTI. As for Annie she fell asleep quite early which gave me the opportunity to cut short my visiting time. Again thanks penny and all for your response. Chris x

My wife had her SAH in January and has since had 4 lots of surgery. The bleed was repaired successfully however she then had encephalitis and a drain was fitted externally. As she became drain dependent a shunt was put in place. It then became clear that the shunt was in the wrong place and the procedure was repeted. Annie started to recover well and the signs were positive. Her short term memory was and still is very poor but long term was good. It became evident that my wife had no voluntary use of her legs however, involuntarily when she stretches, coughs or is asleep she moves them. As for the delusions they have been there since she started to talk, however they seem to get worse when she is hoisted, put in to bed or when she gets anxious (when she needs to go to the loo) I remain very positive and I try to be firm and to the point with the professional team around Annie but at times my concerns fall on stoney ground. Recently to treat my wife's shoulder she had a lignocaine patch and hot pad treatment. This led to her sustaining a nasty burn, which was made worse when they removed the patch. As for now we are currently waiting for an adapted house. Thank you all for you wishes, advice and information, I will continue to post as Annies journey may help others.

Many thanks all for your encouraging feedback. I have seen so much improvement in Annie over the months but this seems to have set us back a little. It's like we've come to a dead end. My wife is suffering with pain in her shoulder which the Consultant says is due to her shoulder dropping in the socket. As she requires hoisting even the physiotherapy and OT sessions seem to have become less and less. This is not a rant but its just nice to know that people who have suffered the same are out there. Again thank you so much.

I am a new member and new to posting on forums. My wife had a subaracnoid haemorrhage in January and is currently in a neuro rehab unit.The haemorrhage has left her wheelchair and hoist dependent however the most dificult problem that I am finding hard to manage is her confusion and her delusions. I would like some reassurance or advice as to the likelihood of the delusions continuing or could they fade as time goes on. Annie is my world and I know they upset her. Many thanks