Janet Posted November 9, 2009 Share Posted November 9, 2009 Hi Ali Much better news hopefully John will continue ot improve and soon have the transfer to the local rehab unit. Quote Link to comment Share on other sites More sharing options...
Skippy Posted November 9, 2009 Share Posted November 9, 2009 Hi Ali Welcome to the site. So sorry to hear about everything you're going through, but it sounds like John is slowly but surely mending. Take heart that someone is trying to get him back where people know him and can help him better than another ward. As the guys on here have said, please don't go through this alone, there is always someone to talk to, moan with or get advice from. It's going to be a long road to recovery, but he's done the hardest bit - he survived. Take care Ali, thinking of you both Quote Link to comment Share on other sites More sharing options...
Louise Posted November 9, 2009 Share Posted November 9, 2009 Hi there good to hear John's back on the ward.....hope improvements continue... Remember to take care of YOURSELF...... Quote Link to comment Share on other sites More sharing options...
Guest Nightingale Posted November 17, 2009 Share Posted November 17, 2009 Hi everyone John's now been on the ward (second time around - sigh !) for 10 days and he seems fairly stable, apart from the EVD not settling well. It leaks every time it's clamped. So 2 more days on the antibiotics to see off the hydrocephalus and if the cultures show he is infection free, looks like it will be a shunt after all. I have sadly had to leave Cambridge yesterday to come home - it's more than a 3 hour drive and I have had to go back to work - they weren't paying me for my absence, albeit to a 3 day week so I can go back to him for the other 4 days, as John will only receive SSP due to being in a very new job. Checking out the benefits available - they don't make it easy for those who are not used to the system. I'm sure I will get my head round it eventually but we will be on such a massively reduced income now I'll at least have something else to fret about ! But money is the least important thing right now; I just want the shunt inserted so we can go back on the transfer list to get him to a local hospital. I do appreciate they can't send him back here until the EVD is out / shunt is in / infection free, but its going to be so hard to travel with such a reduced income next month. Lets just hope he is back near me by then. He doesn't seem too bad overall, a lot more alert and engaged, although he is compensating for things he can't remember with stock answers such as "yes, of course", and telling us he has eaten lunch/seen the doctors/had physio when he hasn't. He is only on his own for 3 days this week, but I do think patients respond so much better to recovery when they have the support & encouragement of their loved ones (in my case a nagging wife LOL). I've picked up on so many things that have been missed by the nursing staff, I am concerned that he won't be looked after as well as he is when I am there during visiting. Quote Link to comment Share on other sites More sharing options...
Super Mario Posted November 17, 2009 Share Posted November 17, 2009 Hi Nightingale. You may be able to get some income support to help out. Contact the helpline for DWP and they should be able to tell you what you are able to claim. Alternatively try the Citizens Advice Bureau and they should be able to help you with entitlements. If you want I can direct you to a forum that will also give you general benefits advice. Just pm me. Quote Link to comment Share on other sites More sharing options...
Tina Posted November 17, 2009 Share Posted November 17, 2009 Hi Nightingale oh dear...its so unfair!! More worry...more stress!! Really hope you can get some help financially and that John will soon be well enough to be transfered nearer to home for you. Please try not to worry...easy to say i know....thinking of you...take care love Tina xx Quote Link to comment Share on other sites More sharing options...
rod123 Posted November 17, 2009 Share Posted November 17, 2009 Hi again Meriill my wife was very much the same as your husband saying she'd seen doctors when she had'nt and people had been in when they had'nt only today when i told her some one had a minor, illness , she said oh i had that about a month ago, and lots of other instances of things she say's happened that had'nt, this is called confabulation it is having memories that dont exist or it may have happened but sometime in the distant past,if you look it up on the net there is lots of info on it,and it does state that it disappears after a period of time, Good luck to you both Quote Link to comment Share on other sites More sharing options...
Guest Nightingale Posted November 21, 2009 Share Posted November 21, 2009 Unfortunately John's recovery has had yet another set back. The (second) EVD was removed yesterday and he has developed meningitis hydrocephalus AGAIN Gone back to theatre to have another one fitted tonight. I am so frustrated and worried. This puts his recovery back at least another 2 or 3 weeks. Quote Link to comment Share on other sites More sharing options...
rod123 Posted November 21, 2009 Share Posted November 21, 2009 Hi Nightinggail sorry to hear of John's setback must be very frustating,Merrill was not without her problems but we got there in the end and i'm sure they will sort these problems out and i found the time went by at double speed so i hope that in a week or so this is all be just a bad memory for you and you have brighter days ahead,Best wishes Quote Link to comment Share on other sites More sharing options...
Guest Nightingale Posted November 22, 2009 Share Posted November 22, 2009 (edited) Just can't believe it happened again. It was within 18 hours of the second EVD being removed. I know removal/wait a few days/shunt is fairly normal procedure but as they had already decided to do a shunt anyway I am assuming that at the point of EVD removal he was infection free or why remove it and stitch the site up, but then a few hours later he isn't infection free ? Just confused and a little cross that it was me that has to make a fuss to point out what the symptoms meant (headaches, lack of communication, nausea & vomiting, site leakage, seizures, high temps etc) the staff on his bay at the time were a student and an HA. As I had researched the symptoms after last time I knew what was happening to John but had to make a heck of a noise to get a senior nurse in and a doctor paged. To be fair they had a CT scan done withing an hour and a half. Worries me though I now have to leave him for 3 days a week, and honestly believe that he is only looked after properly when I am there to notice all that goes on. Rant over ! Thanks for listening.... Ali Nightingale Edited November 22, 2009 by Nightingale Quote Link to comment Share on other sites More sharing options...
Louise Posted November 22, 2009 Share Posted November 22, 2009 Hi there same thing happened to me I got menigitis too..... Money wise, John will be intitled to money too, maybe DLA depending on how things are you never know till you find out, dont be put off by the forms they are a nightmare think their designed to be:crazy: hope things get better soon.... tak care Quote Link to comment Share on other sites More sharing options...
Tina Posted November 22, 2009 Share Posted November 22, 2009 Hi Ali....sorry to hear John is not so good....hope things improve very soon. Thinking of you both...take care. Love Tina xx Quote Link to comment Share on other sites More sharing options...
rod123 Posted November 22, 2009 Share Posted November 22, 2009 Hi sorry to hear of your problems again thats how it seemed for us, but they did sort ot out in the end, though the end never seem to be fast enough merrills consultant was Mr Kirkpatrick and he was very good, the problem is this is nowhere near so scarey for them as it is for us, but stay strong and i'm sure they will sort it in the end .Best wishes Quote Link to comment Share on other sites More sharing options...
paul99 Posted November 23, 2009 Share Posted November 23, 2009 hi ali things will get better promise although the infection may have cleared up within the brain because the medication is dealing with it removing the evd could trigger a re surge because air or oxygen has been allowed to gain access when they removed the evd although it might trigger the infection alert again the medication will continue to knock it out antibiotics work for about ten days after you stop taking it the recovery will be rather quick when the shunt is inserted in respect of mark being able to talk he should become more coherent i had to pull the nurses and the doctors many a time because lin was going down and boy did i shout don't be afraid of bringing there notice to anything you are worried about if you are in financial worries contact the dwp for a grant which is to help you get access to travel to and from hospital also start to claim for dla if mark is limited in what he can do this is a long drawn out form but the sooner you get it in the quicker they will process it fill it in as its marks worse day not a good day just look after yourself ali because your going to need your strength when mark comes home which may be sooner than you think take care sweetheart and try and relax Quote Link to comment Share on other sites More sharing options...
Guest Nightingale Posted November 23, 2009 Share Posted November 23, 2009 Thanks everyone. John was in HDU yesterday (no beds in NCCU) and not too good when I arrived, a GCS of 8-9, but I have to say that the staff reacted really quickly and administered an antibiotic direct to the EVD. Within 10 mins he was back with me.....just wish he could have that immediate level of medical care on the wards too but they just don't have the staffing levels, and the Nurses have to page the doctors every time they even want to give the most basic treatments. Hey Rod, don't worry - I can shout if I need to !! Just cheesed off that I had to diagnose my own husbands condition on the back of some quick lunchtime research, when the only people that were overseeing his Bay at the time was a student and an HA Poor state of affairs really. Am going to attack the benefits system this week with gusto ! Ali N Quote Link to comment Share on other sites More sharing options...
Vivien Posted November 23, 2009 Share Posted November 23, 2009 Hi Ali, well you are getting it from all sides, worry about John and finances! I hope both improves soon Vivien x Quote Link to comment Share on other sites More sharing options...
Super Mario Posted November 23, 2009 Share Posted November 23, 2009 Please be aware that for DLA you have to have had the condition for 3 months before you can claim that. Quote Link to comment Share on other sites More sharing options...
rod123 Posted November 23, 2009 Share Posted November 23, 2009 Hi yes as Penny said you do have to have been ill for 3 months, but when i claimed it for merrill she had only been ill for about four weeks when i was told to put the claim in and they said if approved it would then be in place for when she becomes eligable, i think you have to be able to anticipate that the illness will last at least six month Merrill got full DLA back dated to when the illness started, there is a government web site that tells you the criteria you have to meet, not easy lots of forms to fill and you need to be a patient person, so good luck with that Rod Quote Link to comment Share on other sites More sharing options...
Guest Nightingale Posted December 1, 2009 Share Posted December 1, 2009 Oh I so want to post up some good news on here John was moved back to HDU on 21st Nov after deteriorating as I mentioned in an earlier post. The upshot is that his EVD (the 3rd) was colinised by bugs resistant to the antibiotics (VRE) so last night he had the EVD replaced yet again - Number 4. Back on the NCCU (although they seem obsessively keen on moving him back to a ward, whilst still suffering from a serious infection !) I have made my feelings known in the strongest terms (tears flowed I'm afraid) that I honestly believe he needs one on one care until they beat this 7 week cycle of infections. Just hope someone actually acts on my concerns rather than mouths platitudes. Johns still too confused and ill so I have to be his advocate - no one else will be. To top it off, I have the most vile cold, so have taken the sensible option - after spending today in a surgical mask at least 2 foot away from him and no touching ! - and come home for a couple of days to make myself well again. Just feel so bad that I won't be around for the next couple of days to support him and push things in the right direction. Quote Link to comment Share on other sites More sharing options...
rod123 Posted December 1, 2009 Share Posted December 1, 2009 Hi Ali really sorry to hear things still not going well for you and John, I can well understand that you are very frightened, as i said in my first post Merrill was in Addenbrooks and i really felt that if i'd been a millionaire i could not have got her better treatment, but you really don't seem to be having any luck, I really hope things start to improve for you both and that John is soon heading in the right direction, so I will keep looking for that bit of good news you want to post and hope it comes soon, keep us posted please and Best wishes to you both,stay strong and look after your self. Quote Link to comment Share on other sites More sharing options...
Guest Nightingale Posted December 2, 2009 Share Posted December 2, 2009 Thanks Rod - the positive reports from others really does help keep me centred. I know they are trying to help him but it's as if John falls into an intermediate category of not being ill enough for critical care once his new EVD's are in, but not well enough for general obs on the wards as the level of specialist nursing isn't there. I still keep coming across more mistakes, incomplete notes (his current notes completely missed out on the previous readmission to the NCCU and the 3rd EVD, and also indicated that he was eating and drinking normally in the last 10 days which is nonsense seeing as he has been on a nasal feed again since 21st Nov) which I have encountered several times before. I have spoken to all the docs and nurses that have a direct input into his treatment programme and don't doubt that they are making the right immediate decisions - there is only one treatment option when it comes to infections after all - it's the next stage of control & care once the procedures have been done that seems to be the problem every single time. I know that a patient is just as likely to get infected on CCU as on a ward - it's how he is handled when trying to recover that continues to concern me. Just feel so usefless stuck at home with a bad cold and not able to be there. And I am missing the constant supply of sanigel - I have become totally OCD with regard to germs LOL ! Quote Link to comment Share on other sites More sharing options...
Vivien Posted December 3, 2009 Share Posted December 3, 2009 It must be so frustrating for you when you see the mistakes, I really hope things improve soon. Take care of yourself. Vivien x Quote Link to comment Share on other sites More sharing options...
Guest Nightingale Posted December 17, 2009 Share Posted December 17, 2009 A quick update for those that get off on good news John is doing brilliantly at the moment, scoring high on the cognitive tests and having full on, proper conversations. Wanders off into the land of fantasy every now and again but he looks so incredibly healthy and stood up the other day (with the help of the physios and a rotor frame) for the first time in 9 weeks. He still forgets big things (like the half a dozen times his Mum has visited) but is beginning to get a much better grasp of what has happened to him and his current situation. It's less than a week since his shunt was inserted and hard to believe this is the same man who, this time last week, was in NCCU in an isolation room because he was still so poorly. On Cloud Nine. This gives me the boost I need to cope with the future ups and downs. Doubt we will get the transfer to a local hospital before the New Year now, but it doesn't seem so important now I am seeing such excellent progress. So to any people who are new to this situation, chin up, things can and do get better even when you think that the problems are never ending and progress is slow or non - existent:razz: Ali Nightingale Quote Link to comment Share on other sites More sharing options...
paul99 Posted December 18, 2009 Share Posted December 18, 2009 ali nice to hear such good news at long last this roller coaster dosnt discriminate everyone goes through various stages and dips now john has had the shunt fitted you will see a massive movement forwards even though it may be one day at a time i think you are so drained and shattered because of what both you and john have gone through please make sure you have some me time please you are going to need your strength for when john does come home i am so pleased for you and john im still going through the nightmare although i have more good times but soon brought back to earth with a bump when things don't go right it is lovely to hear that other suffers and family have good news it boosts me up knowing others do have good news and who are willing to share it with others just take care and enjoy what you have take care ali regards to john Quote Link to comment Share on other sites More sharing options...
Tina Posted December 18, 2009 Share Posted December 18, 2009 Hi Ali :-D so very pleased for you both......John is doing so well !! Great to hear you are on cloud nine Take care both...love Tina xx Quote Link to comment Share on other sites More sharing options...
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