ToriC

Hi All i hope that you still maybe interested in my updates so here it goes... Mum is now walking down the corridor with a zimmer in her physio sessions and doing really well with it!! She is also transferring to the loo and bed with a spinner thing so she stands etc...very impressed!! The week before all this , the ward consultant told me that she doubted very much that my Mum would walk again... now she is getting more aware, she is getting very irritated and restless. She says she is stupid and cant understand why she can’t do the things she used to. She gets really upset...I’m presuming that this is a pretty common phase? She is still struggling with orientation...knowing what day/ month/ year it is but she has prompts in her room that she can read. Her reading is getting better but we don’t think she is understanding what she is reading at the minute... 5 months in now and I cannot believe they difference over the last 6 weeks in rehab.

Thank you so much for your reply. We are 4 months in now but it's not been plain sailing and has had lots of set backs. Ventriculitis and colitis have set her rehab back so it's more like 3 months really....so all in all not a long time at all. I think she is doing really well-I think the therapists want more but she has had a grade 5 rupture and in my eyes is a miricle! They think she has right hand neglect-she struggles with focus on that side...she goes to reach something with her right hand and misses it etc. Again something that the OTs are working on. I am just constantly worried that they will give up on her. She is a lot better with me because she knows me...but they do like to do their therapy,meal times etc without us being there. Her personality is also back and she is very funny!! Talks about alcohol a lot haha

Hi there i just thought I would give you an update and I would like some advice if possible? Mum is just into her 4th week in rehab now. She sits out most days and participates in music group (singing etc). She is on a solids diet and feeds herself with her left hand. I think she is making excellent progress!! The occupatinal therapists are very challenged with her though as she has multipul cognitive disfunctions. She is still very in unaware of time, location and self...if you asked her what she has done that day she either says "I can't remember" or that she has been cleaning the house or mucking the horses out. And struggles with simple commands sometimes or forgets that the nurses have told her not to do something (pull at a tube etc). Did any of you tell nurses and loved ones that you were somewhere other than hospital etc etc? She now knows me and calls me by my name now and knows that I'm her daughter. As with my brother, my Dad (her ex) and our dog's names. And makes sense sometimes but then gets lots and comes out with completely the wrong words. Can this improve?? We have taken the the dog to see her and she patted and stroked him and knew who he was. Thanks all. Tori

Hi all Mum went to rehab last Friday. She still has a very upset stomach so it's holding them back a bit but they are assessing her at the minute. She is in The Haywood In Stoke? She he is continuing to make more sense each time I see her but still forgets a lot. She put her own glasses on when I was there the other day. I'm hoping that there will be lots of improvements now x

Hi All i just thought that I would update. It is now 3 months since my Mum's grade 5 bleed. She is still sat in the neuro ward waiting for a bed to become available in the rehab ward next door. It is now 3+ weeks since she was referred. She needs therapy now as she is at the stage where she needs to be pushed. She is having a peg this week so her feeding tube from her nose can be removed. She is eating puréed food orally but not enough for her to not have a peg. She also says that the puréed meals are disgusting. I don't blame her for not wanting to eat them to be honest. She eats for me as I can be a bit more forceful but the nurses have to be so careful and PC that they cannot feed her unless she willingly just opens her mouth. I took some lovely puréed baby food in today by Ella's kitchen and asked the nurses to try her wth that (I couldn't stay for feeding tonight). Anyway my great Auntie went tonight and they hadn't been touched. I'm getting pretty frustrated!! I am trying to do everything for my Mum not to have the peg but I just can't be there every minute of every day and I just wish the nurses could spend a bit more time and persuade her a little more (with food that she actually wants to eat!). Otherwise all limbs are moving now but she is bed bound again due to a seriously upset stomach that she has had for 3 weeks. She has sores now from it. She had a stomach CT last night and they think it's just colitis. She talks about allsorts of things-some makes sense some does not. I am just keeping everything crossed for a rehab bed soon.

Question-did any of you suffer with sight problems when first recovering from a grade 4/5 bleed? Did it improve? I think this is quite apparent with my Mum at the minute but she is doing so well other wise! I can't wait for rehab now!

Thanks All She is speaking a lot now but still isn't making that much sense. I think she thinks she is in various different scenarios and she willl suddenly say things like "we have a lot of booze to finish off" and says things about old relatives that are not alive anymore?? I'm not entirely sure how good her vision is-sometimes she makes eye contact with you and then all of a sudden she is trying to look all around the room for things-you can wave your half around in front of her eyes and she doesn't react or follow you. She was also trying to drink out a wine glass that she thought she had in her hand-it wasn't there at all so she must have been imagining it. They do say that vision can take a while to come back or improve. She is now trialling puréed food-she said the custard was disgusting but ate some puréed chicken and veg last night. Hoping to go to rehab soon! Xx

Hi All so it has now been 2 months since my Mum's rupture. She has been out of ICU for 3 weeks now and is just waiting for a bed on a rehab ward. She is being spoon fed food-she only had her trachy out last Monday!! And she is now talking. She isnt making much sense at the minute but can kind of put small sentences together. I'm sure that once she goes to rehab they will get her talking, walking and remembering again. She had the shunt done on Wednesday and seems to have made huge improvements since then-she is awake more and the conceiousness is not fluctuating as much. Hopefully it's onwards and upwards now xx

Thank you so much for your kind words. She is now on a ward-she has been there for 3 days now and already looks better. It's so light and airy there and she shares the room with 3 other ladies so a lot more "normal". She has been responding more and staying awake for longer spells. When she was awake I did show her a picture of my dog (who she adores) and she recognised him and mouthed his name-it brought a tear to my eye!! She also said "no" and "yes" to the neuros this morning so they now know that I am not lying to them when I say she responds. She is in such an amazing hospital-I cannot fault the North Staffs hospital...amazing people!! More physio tomorrow and a possible shunt next week! X

Good news is is that she is going to a neuro ward now!! As soon as there is a bed for her ??. She has responded to the neuros the last too days-when they say her name she opens her eyes. She has been in the chair for 2.5 hours today and has been out in it each day since Friday. When she is awake she nods and shakes her head when you ask her questions...she also mouths yes and no and looks like she is teittering one but I cannot lip read. She has also been breathing completely for her self for the past 2 days. They will therefore but a speech valve on her trachy in the next day or 2. She sleeps a lot!! Xxx

Hi all my Mum is now nodding and opening her eyes to response. She mouths "yes" and "no" and mouths things that I don't know what she is saying. She is also reacting more to pain. She isn't doing all the mentioned improvements all the time, bit she is more often each day. The physios have hoisted her into a chair a couple of times and we got to take her outside. When they did some exercises with her, she held her own head up-it was amazing to see!! She has been on the trachy mask for 16 hours yesterday so could be ventilator free this week!! She will be able to talk when she is trachy free hopefully. I just hope she improves from here...the drs are still monitoring her with EEGs but they are still saying minimal brain activity is showing when she is improving so much?! Maybe I just take the EEG with a pinch of salt?

Hi all thank you again for your kind words. We have made a bit of progress over the last couple of days. She has only been doing trachy mask trials for the past 2 days and ended up doing 7 hours on it today. She was also showing sleep/wake cycles...when you caught her in her awake state she would open her eyes and mouth words-she even cried today. But then she drifts off into unconciousness again... she also nods and says "yes". The physios have had her sat at the end of the bed-fully supported obviously but it's a start. The neuros say she still has some swelling of the brain so as that goes down her consciousness should improve. I will be back to see her in the morning. Xxx

Thank you both so much for your replies. I have put music onto an I pod for her with some of her favourite artists, so she is listening to that. I go in the morning and my brother goes in the evening... Today she has had lifted and moved her left arm a few times-this is the first time I have seen this since she got Ventriculitis. And she has moved her head from side to side and reacted when I said "Mum, open your eyes". She was really trying and frowning a lot. I am hoping we are getting back to what we had before the infection and then can build on this. She is a very strong woman and I am sure she is thinking about being at my wedding next Summer. Xx

Hi all i am new to the group. My name is Tori and my Mum, Pat, has been in ICU 5 weeks today. 5 weeks ago my Mum collapsed with the worst headache, her voice went slurry and she quickly lost consciousness. She was rushed into her local hospital where she had a CT scan, which confirmed a huge bleed in her brain. She was then blue lighted to a fantastic neuro team 30 mins up the road, where she was straight into brain surgery. This surgery was to insert a drain (EVD) into her brain to relieve a huge amount of pressure and blood. The neuros said that she may not make the night and the bleeding was grade 4-5. Anyhow she came off the ventilator the next day but did not really wake. By the next day she had moved her arms a little and said yes and no. Then she went for surgery to have 1 ruptured and 1 unruptured anuerysm coiledit took 6 hours. By the weekend she was back on the ventilator and sedated due to seizure activity detected-could have been from the coiling and swelling etc. Then after 3 days on sedation and lots of seizure meds, she was weaned off it and she was left to wake up but still ventilated. She was very intermittent with commands and sometimes would stick her tongue out for the nurses, and sometime wouldn't etc. Her breathing was good as the ventilator was assisiting her rather than completely breathing for her-she then went for surgery for a tracheostomy. She then made more improvements with pain reactions and some eye opening, and told one of the nurses she was ok one night. She nodded at me a few times too and was moving her head around etc. Then she had to go back to surgery to have the drain realigned as it had migrated. This was 3 weeks in to her ICU stay...then 2 days after the drain realignment infection hit! Her temp sored and so did her heart rate...she was shaking uncontrolebly. Therefore sedation was the only answer so she then spent 10 days in and out of heavy sedation so that the infection could be treated. The infection was in CSF and Ventriculitis set in. At the weekend the sedation was finally lifted successfully with no soring Heartrate or temp. She now has daily lumber punctures and the drain has been removed (it was harbouring infection). Her opening pressure is getting better so I'm hoping her ventricles will get smaller and the CSF is no longer growing bugs. Since being off all the sedation 2 days ago she hasn't really done anything-her eyes open when she is turned and they open when she coughs. But her body is now very still. I'm really hoping that the sedation is just taking its time to go and that the Ventriculitis could be holding things back. I'm just looking for experiences really and hoping that 5 weeks is still very early days???