Vialdana

The hospital is having great difficulty getting Andy to eat and drink enough. He pulled out his NG tubes repeatedly till it was either try without it, or fit him with a bridle to try and keep it in place. Having been advised that a bridle should be a last resort we (the hosp and myself when there) are trying to get him to eat and drink enough through the day. He's on a soft food diet, with thickened drinks, and doesn't want to eat or drink most of the time. Each day he's bearly getting the minimum he needs and thats only coz when I'm there I push him hard to eat and drink. Yesterday I got 5 cupfuls down him in 4 hours plus a yoghurt and half his dinner, and today 3 cups, all the meds he'd refused/spat at them earlier in the day, and all the main course of his dinner. Bearing in mind I got there at 2pm he'd only had 1 cup of juice and a banana first thing then had got grotty and swore at the nurse and spat at her when she tried to feed him or get him to take meds. I can't spend any longer per day there - wish I could - but I'm there for about 4 hours, and it takes me about an hour and a half to get there and same getting home on top of that, and I have fibromyalgia myself so I'm right at the edge of my own health collapsing if I'm not careful. The hospital has suggested I bring in things he likes to tempt him with - not managed to think of much that falls in the 'soft food' diet of puree'd/mashed stuff that I can take in that they don't already have, and I'm getting worried that he's going to go backwards if he doesn't start eating and drinking properly Anyone else have this issue? Any ideas? How the heck do I get him to realise he's got to eat and drink more Also - today Andy had a lumbar puncture done and they drained off some fluid partly to check if the infection he had has gone, but partly to check to see if he was getting a build up of fluid. They tell me that he's not got much pressure there which is good, but at the same time he did seem happier after it was done, and I don't know if this was just coincidence, or if less fluid actually helpped him. There was talk that he might not be moving forward fast and that the temp might be going up coz he needs a shunt putting in, and that they might do that tuesday, but now they're re-thinking that coz they're saying the pressure was low and that they think he may still have infection. Arrrg - right now I feel like I'm starting to go a little bit nuts. Not sleeping well, keep dreaming about all of this and am finding everything very hard. I just wish he'd start co-operating and moving forwards Sorry to sound so negative, I'm exhausted and running out of ideas and coping strategy so if anyone has any helpful tips/hints/ideas/experiences that might help, I'd love to hear from you here or by pm. I'm just so worried.

Ahh hey Dafodill - you are local to me aren't you! - And many many thanks for signposting me here, it was very very appreciated, and has already helpped me to meet others who've been through some of the same stuff as Hubby has. Yep he's had several scans before the EVD was removed because he did have ventriculitis (due to infection) and he also had vasospasm as well. Scans have shown these easing however, and he's due another scan sometime next week to make sure he's got no build up of CSF since the EVD was removed a week ago yesterday. (It had been clamped on and off for a few days before removal, but had been left in to allow Interthecal antibiotics to be given - was removed because it was populated with a 2nd infection and causing more probs than good). Am worrying about his temp at the moment which hit 39.7 again yesterday, and was at 38.7 when I rang this morning. I have a horrid feeling they're going to have to give diclofenac again as the paracetamol isn't bringing it down again. I just hope to god it doesn't mean he's got another infection somewhere somehow We've dealt with 3 already (pneumonia and 2 brain infections). *sigh* I so want him past all this so he, I and they can concentrate on his physio/speech therapy properly and get him moving forwards towards recovery.

Thanks both, it's actually a huge help to hear that others had similar confusion and jumbled words issues and that it can improve I've been worrying about that side of it more than anythign else I think. He's getting physio and speech therapy alternating days - well speech & language are concentrating atm on his swallowing and eating/drinking, but I'm hoping that next time they come in (tomorrow I think), they'll pass him as ok for regular liquid, and we'll move forward another step and they'll start looking more at his speech and language. He's a very determined person as am I, and as I have Fibromyalgia and have had for the last 15 years, I've some experience of the physical issues (I have fat handled cutlery, perch stool, etc. already) It means I at least know about many of the physical aides that are available for home use if he needs them when he does come home. I guess this is why its the speech and mental confusion etc. issues are the ones I am worrying about more about tbh.

Hello all. Came here after it was recommended by someone on the Different Strokes facebook group as a good place for specific SAH info and people's stories/experiences. My husband had an aneurysm that burst quite suddenly just over 6 weeks ago, and caused an SAH. He had what he thought was his first ever migraine while I was out shopping. When I returned, he was sleeping and a while later when I nipped out I returned to find him sat on the bathroom floor very sick and shaky. He didn't seem right somehow, and I got him to move his head around and he said his neck was stiff. His speech was a little odd - not slurred as such but not normal, and he didn't know what year it was when I asked him so I called NHS direct - they told me to call the GP within 2 hours but I did so immediately which I'm very glad of as they said call ambulence which I did. The ambulence people being with us when they were almost certainly saved his life as he collapsed at the bottom of the stairs with them, and then when they got him onto a bed and into the ambulence he stopped breathing on the way to MK hospital. Although Milton Keynes is our home town and normally feeds to Oxford for Neuro stuff, we were sent to Addenbrookes in Cambridge because Oxford couldn't take him. That same night he had an EVD (drain) put in, and a little over a week later after the pneumonia had eased he had his aneurysm coiled. He was in the NCCU there for 5 and a half weeks, suffered from vasospasm, two infections one after the other in his brain and vasculitis caused by the infection. He had the EVD removed last Thursday, and was moved out of NCCU onto a neuro ward the following day. He's now taking thickened liquid and pureed food which is great because he pulled out his NG Tube (feed tube), quite a few times in determination not to have it left in. He's still on antibiotics to get rid of the last of the infection, he's still getting high temperatures, his speech is very confused and aphasic and he doesn't seem to know where he is although when I explain things to him he seems to understand them at the time they're said quite well. He's unable to give names of things/people at all at the moment but says he knows who I am and managed about 2 wks ago to spell my name (wrongly but all the right letters) even though he couldn't say it. It's a very confusing time for me, and I'm really concerned about his ability to communicate with us all. If anyone out there has experienced any of the above and can offer me their experiences I'd be very glad to hear as I'm struggling a bit at the moment to stay as positive as I want to be though I only cry/show my lowness when I'm alone at home - I won't let him see it. For him I'll be positive and strong etc. etc. Anyway... that's our story so far. Vi xx