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Diary of Les Yates October 2006

I will update this area as often as I can, please bear with me. Helen
Saturday 7th October 2006

For those of you who don't know,

I am Helen, Jeans Daughter, Ed is my husband. Paul is Les's Son, along with his other children, Mark, Steven and Gilly. Jennie is like a daughter and a sister to us.

You, Ed and I went to Jennies for Dinner, we had a lovely time and finished up bringing you home at midnight, you had been really cold at Jennies but that was nothing new, I left you at your house so you could go to bed, we thought everything was fine.

Day 1 Sunday 8th October 2006

You called me at lunchtime, you were crying and asked for Help, I came round straight away. I phoned the NHS direct and they sent an ambulance straight away, you told me that you hadn't actually gone to bed that night as you had a pain in your tummy, then at 10am you passed out in the bathroom, when you came round you tried to get down stairs and that's when you called me.

The ambulance arrived quickly, and when we got to hospital you were eventually seen by the specialist registrar called Myles, he understood straightaway about your Good Pastures and your transplant, then he felt your tummy and asked if you had an Aortic aneurism, you said yes, they took you for an MRI scan as they suspected that it had ruptured and that you were bleeding internally. You came back and then everything started moving so quickly that it became a bit of a blur, basically they started putting all sorts of lines into you, you were so good, swearing occasionally but they talked to me and confirmed that it had ruptured and that you were bleeding, they said that you needed an operation immediately but it was a serious operation and the chance of coming through it were slim, the risk of you losing your kidney was a 90% chance but we had no choice, they said without it you had about an hour to live. I agreed and you were semi conscious at the time, I said goodbye to you and they took you away. It was now gone 4pm but it felt like days since I first came round to you.

Ed had arrived at the hospital by then and I was so glad as I lost control and broke down, we phone for Brother Paul and Jennie to come, which they did and the four of us sat and waited for news all night.  The hospital staff were brilliant and they gave us the family room on ITU where we sat patiently for any news, we knew how serious an operation you were going through but we also knew it was your only chance, finally about midnight the surgeon Mr Chowdary came and saw us, he told us that he was very happy at how the surgery had gone but you were critical, they allowed us in to see you. I have to be honest but I wasn't prepared for all the tubes and wires etc. We weren't allowed to stay with you long, before they asked us to leave. They needed to do some more things to you and make you comfortable. We sat in the family room and talked for a while and then we come home, Paul and Jennie then left in the early hours and we all tried to get some sleep. None of us slept that night and we were back at the hospital early the next day.

Day 2 Monday 9th October 2006.

Called mum, text her and then left a message on the ship, she is on a cruise in the Baltic and getting a message to her proved a lot harder than I thought it would. We went to the hospital and were with you most of the day again, we also used the family room a lot, they only like 2 or 3 at your bedside at a time and there were four of us. Mum called and I explained everything, she said she would organise a flight home. We sat all day and night with you, you were incredibly unstable and the doctors and nurses were running round you all the time, you are now linked to a respirator, dialysis machine, enough drips and syringes with all sorts of medication going into you, all linked to monitors and paraphernalia everywhere.

Day 3 Tuesday 10th October 2006

Jennie arrived at mine at 9am, I was about to phone your brother Terry and let him know, I picked the phone up to dial and it rang, I stood there staring at it, finally I answered the phone and it was the hospital, they asked if we could come in straight away and to call the family. I called Paul and asked him to phone the others, Ed drove Jennie and I to the hospital, I had to shout at him for speeding, he was doing well over a hundred, at that point I wasn't sure whether I really wanted to come. We arrived at the hospital and they told us that you wouldn't last the day out, Paul arrived just after us and we sat with you, Gilly arrived next and couldn't handle the shock, next Steven arrived and then Mark, Mark I think took it the hardest, he just clammed up, it was so painful to watch them. I think we were all in shock really as we sat there numbly staring at each other. Mother called me and said that her and Gill were on their way and would be with us by 8pm, the cruise dropped her at Copenhagen, she then flew from there to Amsterdam, Amsterdam to Birmingham and then a train down. Ed went to pick her up from the train station. All day your blood pressure went from 40/20 to 220/100, the tears were flowing and I kept begging you to hold on until mum arrived, we all took it in turns to sit and talk with you, the nurses were encouraging us to talk non-stop to you, they were sure you could hear us.

Mother & Gill arrived at 8pm and came straight in to see you, you made it through till then, you were fighting this and I was so proud of you. Ed took mother home a few hours later and Paul, Jennie and I stayed for a while, in the end we had to leave as well. We were willing you to make it through the night.

Day 4 Wednesday 11 October 2006.

Gilly, Jennie and I arrived early to see you and you had settled down over night, we knew you were a fighter, we sat with you all day , Mother,  Paul and Ed arrived, and it was a long day, you struggled again having many incidents through the day, but we lived them with you. I emailed Terry in the end and have been telling him all about you, also spoke to everyone else you know, they are all routing for you as well. Starting to act like a zombie now, no sleep or food but I only want to sit with you, I don't want to be anywhere else and Jennie, Paul and Ed are as bad as me. At least we have each other. Not a lot to write today, your are still unstable and critical, they are keeping you heavily sedated as it gives your body the best chance of healing, the doctors think that you are still bleeding inside, they are pumping blood into you all the time and clogging agents as your blood isn't clotting. You look so helpless lying there, I just wish there was something we could do for you.

Day 5 Thursday 12 October 2006.

You had a real major incident today, they had to paddle your heart, they also ran an echo test on you, the emotional rollercoaster that we are on is taking it's toll, people are starting to feel ill, it's stress and lack of sleep etc, but we are all still here day and night, Mother has come down with a cold and so has Ed.  Jennie, Paul and I are still here every hour and Ed is allowed in the family room only, all day you were up and down on your blood pressure and then your heart rate started as well, every time the nurses touched you, your blood pressure dropped and then went sky high, we thought this was it again, the doctors kept talking to us, always they were negative but we knew you could fight this, we were all there willing you to fight this. We had our first hot meal tonight, Ed went and got a curry and brought it into the family room and Paul, Ed and I sat there at 10pm eating this curry, you would have laughed at us if you could have seen us, actually you would have joined in. We couldn't eat it all, but we managed some of it.

Day 6 Friday

You don't seem to be behaving yourself over night, most mornings now when Jennie calls in they say the same thing, he's had a few incidents over night, we all come in again and today you had a visit from your kidney specialist Phil Mason, you are completely sedated and we aren't getting much response from you but as soon as you heard him he upset you, he said that as soon as you are well enough then he would transfer you to oxford to the John Radcliffe, well you weren't having any of that, first your blood pressure went through the roof then your heart rate went really quickly, I told you he had gone and you started to calm down, later when the doctors came round mum repeated what had happened and as soon as she mention his name and oxford again you went berserk, you are obviously listening to everything we say.

Day 7 Saturday

I had to visit Nan this morning, she needed some help, arrived with you about lunchtime and Gilly had come to see you as well as Jennie.

Day 8 Sunday

I arrived early this morning but Gilly and Steven had beaten me to it, they were at your bedside already, you had quite a good night again, you seemed pretty stable throughout the morning that was to lull me into a false sense of security, in the afternoon you had a few incidents, you also had problems with the respirator so they asked us to leave while they gave you a chest x-ray and an echo, the doctor spoke to us afterward and said that your left lung has collapsed and that you now have an infection, pneumonia as well as fluid around it. They put some tubes down you and you had a mucus blockage that they cleared, they then gave you some antibiotics and we had to wait and see. You really are trying to panic us, and doing a really good job, each day we think they can't possible tell us any more bad news. But each day you fight more and more, they said that you will hopefully have a tracheotomy this week, I'm not sure whether this is good or bad at the moment but we will find out.

Day 9 Monday 16th October 2006

Got the call from Jennie like normal, she is being so good doing these morning phone calls, you had been stable all night which was a good sign. Gathered myself together and then went into work for the first time, everyone is telling me that I need some normality back in my life, I am trying so hard but all I want is to sit there with you. Sat at work and found that I couldn't talk to people, their sympathy made things four times as bad, I sat with my head down and tried to work but was pretty hopeless. Lunchtime Mum rang me and said that they were going to start bringing you out of sedation, I got so excited and couldn't contain myself, I told my boss that I was coming to the hospital, they have been so good and patient with me, I met mum and we came to you, Jennie was there as well and you looked so much better, I was finally seeing daylight at the end of this, you started to stir and open your eyes, and then your finger were moving. When we spoke you responded with finger movement, mum asked you a question and we are sure you nodded. It didn't last long though, you started struggling it was too much especially with all the tubes down you, so they started sedating you again. We were happy though because you seemed so much better, we were so sure that you were finally pulling through this, I phoned everyone and told them so. It was only time now for you to have the tubes removed and to be woken up properly. We could all feel the excitement building, the doctors were still pessimist but we understood why, you were still critical and we understood that, but you were building our hopes up.

Day 10 Tuesday 17th October 2006

Went to work today again after having the morning phone call to say that you had been stable again all night, really impressed at the way you have been, so much more positive today about the situation, actually started talking to the people at work today instead of sitting there with head down. Met mum at lunchtime and she had been in to see you, she said that you were pretty sedated but doing well, they told her that they would do a tracheotomy on you tomorrow, so things looked good. Jennie took over visiting in the afternoon and I met Jennie at the hospital at 4.30pm. We had been with you for 2 hours and you hadn't responded much to us, we knew you were sedated well but you hadn't looked better, the smiles on our faces proved that. I felt the most relaxed since this had started. We were giving you a kiss goodbye as Ed was cooking dinner and I thought that you wouldn't mind if I didn't stay all night, we were just about to go when the doctor asked to see me. He took us into his office and sat us down. We always know it's bad when he takes us in there. He spoke slowly and said that they had now tried to revive you two days running slowly and only for a brief period, he wasn't happy about your responses, we had been, but he told us that they think you have brain damage, they can't say how badly until they bring you fully round. He also said about your tracheotomy, they are going ahead with it but seeing as you are so unstable they need to do this under general anaesthetic with the Top ENT Surgeon, they are unsure whether you will survive this but they have no choice, the respiratory tubes that you have should only have been in you 3 days but you have had them 10 and they are causing damage to you. I feel as though they have taken the floor out of my world again, how can they say this after you have been so good for days, I was so excited yesterday and today and then they do this. He also asked me to go and tell Mum and she needs to come in tomorrow to sign the consent forms in the morning, how do I tell my mother this, Jennie and I thanked the doctor for his honesty (not that I wanted to) and we left the hospital and went straight to mothers, she took the news too well, not sure how she really is coping, denial is a good way to cope and I think she is there, but I am also sure she opens up to Gill more. Ed will take her to the hospital in the morning, he will be stronger than me emotionally. I know you can pull through this but now I am wondering if you are as bad as they say whether you will want to come through this, I have no idea where my mind is and it is now 2am and I just want to be with you and can't be. I called Paul, Sarah, Nan and Terry tonight and no one knows what is for the best. I feel so useless and helpless.

Day 11 Wednesday 18th October 2006

Jennie called this morning, regular as clockwork, just gone seven every morning she calls to update us on your nights antics, the hospital only wanted one phone call each morning from us lot, I am too much of a coward to call in the mornings in case it's bad news. Jennie said that you'd had a rough night again and that your blood pressure was up and down again. The hospital said that they didn't think they would go ahead with the tracheotomy today as you weren't stable enough. Jennie isn't coping well today and she was very tearful on the phone. I went to work again but I have to say that I was worse than a chocolate teapot, Ed took mum to the hospital and again they had changed their mind by the time they got there, you will be having the op at 12 today, my emotions are now everywhere, I left work at 11.30 today as I was no use to them, I'm not allowed at the hospital as you are having your op but I can't seem to function either. I spoke to Paul and he's not much better and then I called Jennie, she has now gone home as well. You would call us all useless if you could see us and I know I am. We are just so worried that is all. We are allowed to come and see you after 4 today. will update again after we have seen you.

Well I have been to see you and god you are fighting, you managed to come through the operation, I can't even start to tell you how I was feeling last night and this morning, lets just say that I wasn't coping at all well. mum and I came to see you and you looked calm and all your levels on the monitor where stable but high, the nurse was pleased with you and they have stopped the sedation. They think it will be nearly 2 full days until you fully come round, she did keep going on though about brain damage and asked us how your features on your face normally look. She asked about your stroke earlier this year and what side it was on, mum said left and I said right. I was correct and it's that side that they are concerned about, but you had lost all the droopiness from that side and your face was normal. I am wishing so hard that you haven't suffered any damage but I could see what she was talking about. I believe that it's because you are still under the sedation that's all. We left you quite early tonight so that you could have some sleep, not that you have been asleep all these days, plus the nurse was going to fit a catheter to you, they are hoping that there might be a little life in your kidney, they have to try at least but I am really not holding out on that one, it's too much to wish for.

Day 12 Thursday 19th October 2006

Today started like normal, Jennie rang and told us that you had, had a very comfortable night, this lifted my spirits so much, I went to work with a smile on my face and was a very happy girl. Mother phoned me at work and asked about your notes that were sent with you from France back in June, they wanted to know what blood pressure medicine you had been on as they had managed to stabilise you, I said that she had a copy somewhere in the house, also the doctor and the hospital both had copies. She asked that when I go to the hospital could I sort it for her. I left work just after lunch and come to see you. The doctor was already with you, so I spoke to him and he assured me that he would look through your file at the notes, they said that you hadn't been stable all morning and that they were struggling with your blood pressure and your heart rate was erratic. Jennie was there with you and within five minutes of me being there, they asked us to leave as they needed to change some of the lines that were going into you, they want to move you dialysis line to your groin and some of the other lines in your neck to the other side, the doctor said it would be about an hour so we went and sat in the visitors room. We waited and waited an no-one came to get us, after an hour and a half we buzzed again and they said about another 45 minutes, Jennie decided to go home and I waited, Paul arrived and we waited again, mother arrived and after two and half hours they finally let us back in. They had sedated you to put the lines in so where I thought you might be coming round a little you were back out cold. Your blood pressure and heart rate were still very erratic and they couldn't stabilise it, the nurses where running around you a lot, so we left and let them sort you out. I thought we were coming through this and that you might have been conscious and recognised us but we have had a little set back, hopefully over the weekend we will see some improvement.

I hope you don't mind but tonight Jennie & her Paul, Ed & I went out, we had pre-booked tickets for the Theatre for Ed's birthday and even the doctors and nurses said that we ought to go, I felt guilty about leaving you alone but you didn't know we were there anyway. I also felt guilty enjoying myself but I think it did the four of us a favour to have a night off, we went to see the Rocky Horror show, although we didn't dress up as we weren't in the mood, we ended up having a really nice evening, we relaxed and I think we needed a break. I'm sure that you would have encouraged us to go. I will see you tomorrow, I hope you have a good night tonight and please no more incidents.

Day 13 Friday 20th October 2006

Today has been strange, got a phone call from Jennie like normal, you had a very comfortable night, they said the best one yet, but 10 mins before the phone call your BP went to 230/110, mum went to see you this morning and she came to my work a 2pm and said that your BP was now low, I wish you would make your mind up. I came to see you just after 3pm and you still haven't come out of your sedation yet, today's nurse said that your BP had been constantly low, that's good and bad at the same time, low blood pressure is not good for you but the constant is. Debbie from Physio came to see you while I was there, she wasn't happy with your lungs and needed to pummel your chest a bit, you didn't like that at all but she managed to bring some nasty stuff up from it, they are doing everything possible to keep you comfortable. Also you weren't on dialysis today, they want to try and start getting your body into a routine ready for long term dialysis, apart from your arms were so swollen with fluid and that's just form 15 hours without it. I sat next to you and held your hand and talked to you, apart from 20 minutes when I put my head on your chest and fell asleep. I'm sure you didn't mind and the nurses didn't, silly really I can't sleep at night but as soon as I get to the hospital I could sleep for England. None of the doctors know how to treat your BP, I'm hoping that when I visit in the morning you may be conscious a little bit, here's hoping you have a good night.

Day 14 Saturday 21st October 2006

Well we are at the two week mile stone today, the phone call this morning was not good, you had a really bad night and they are worried, your blood pressure has been low and unstable and things weren't right. I went and picked mum up and we came to the hospital. The doctor (Matt) was at your bedside when we got there, he looked concerned and then he told us that  your gut had stopped working so they have to take you off the feed drip and put you on intravenous food to bypass the stomach, there are problems with your liver and your skin is yellow with jaundice, you are back on strong medication to get your blood pressure higher, your lungs aren't clear so they have increased your oxygen levels and they have changed your antibiotics as they think that you may have an infection. The other concern they have is that you have still not come round, they stopped the sedation on Thursday and are worried because you still aren't with us, he wants to do another MRI scan on your brain to see how much brain damage has been done. They have put you back on the dialysis machine today and some of the fluid is coming off your arms but there is still a lot there. Jennie met us at hospital and we sat there all day with you, mum wasn't sure whether you would pull through today, it was emotionally very strained. But suddenly later in the afternoon you became a little more stable, your breathing got more regular and your BP went up to a comfortable level. No one knows what to do with you, they are trying everything possible but you just wont play ball with them.  I really wish you would come round, but I think it will be too much for your body to cope with, I'm confused and I now don't know what I want for you.

Day 15 Sunday 22nd October 2006

You had a comfortable night last night, we are coming to see you early today and spend an hour with you, then we are going to Nan's, it's Ed and Nan's birthday tomorrow so we are going out for lunch, the only problem I have is if you have come round by the time we get there today, then I will not want to leave you and go to Stopsley. Jennie is coming in early as well to cover whilst we are gone, so you will have company. Please be awake for me, it's a small wish but I need something positive at the moment, feeling pretty down and lethargic, Ed tried to get me to snap out of this depression state, but I don't want to, I'm happy when I am with you but when I'm back here I'm not coping very well. Well I had better get dressed and then I can come and see you, I will update here tonight when I have had a few hours with you.

We came to see you, Jennie was there already, we stayed with you for half an hour, you weren't with us at all, but at least all the monitors were stable, we took Nan and Ed out to lunch with mother, we went to Hexton, it was a pretty sombre meal but at least I got to see Nan and spend some time with Ed, I'm sure they enjoyed it, I know that I wasn't my normal self but I think they are used to that now. We dropped Nan back at home and started driving back to the hospital, the weather was diabolical and mum dozed in the back of the car, I must admit I struggled driving that far, I'm so tired and I know I'm not concentrating, we left the M1 and mum's mobile went off, she woke up and it was an undisclosed number, my heart sank and I panicked. Mum missed the call, and it went to voicemail, she started to listen to it and then my mobile rang, Ed answered it, all the time I was preparing myself  for the worst, but it was the hospital, you had finally come round from the sedation and you wanted to see us. I started driving faster and we were at the hospital in minutes.

We came into the ward and Gilly and Steven were with you, they left as soon as we got there, Mum started crying immediately which I am so pleased about, she had been trying to keep her emotions controlled but tonight the relief was just too much, we stood there the two of us just crying and trying to talk to you, you were trying to mouth words to us, we told you not to, but you responded to all our questions with nods and your eyes followed ours everywhere. I can't tell you what a relief it is just to see your eyes recognising us, I couldn't speak because I was so chocked up with tears, after 10 minutes I went into the family room to sort myself out, Ed, Jennie, Steven and Gilly were there, all of us cannot believe that you have come round, I know we aren't allowed to hope for too much still but this is amazing, I really didn't think we would get to this stage. Paul had been in earlier but hadn't seen you fully awake, but he's coming back in tomorrow and is excited like we are.

Jennie and I came back in and spent some more time with you, finally they asked the three of us to leave as they needed to turn you, mum had asked you if you were in pain and you shook your head, we were again relieved, I know you are on pain killers but it is still good news, we also tried to tell you that you had been asleep for two weeks, but I don't think you believed us. I have emailed everyone tonight to let them know, also I called Nan and she is so happy for us and you. I think tonight I might actually sleep properly, I hope you do. I will be in tomorrow to see you after work, we have a rota set up, Mum in the morning, Jennie after lunch and me after work. The others come when they can, but we all keep in contact everyday by phone and email. I love you so much and need you to get better, I also know though that it will be a long hard journey but I am positive. We need you to fight this and come through this.....

Day 16 Monday 23 October 2006

Today is Ed and Nan's birthday, Jennie called like normal to say that you had a good night and that you are still awake and communicating, however they are still concerned about your heart rate. Mum went to see you this morning, I went to work, haven't spoken to mum today but Heloise said that mum had been with you this morning, Heloise is your main nurse now, she is lovely and she tells us everything that goes on, she doesn't believe in sparing any details at all for the relatives. I met Jennie at the hospital at 2.30pm, work let me out early again, I really can't thank them enough they are being brilliant this year with the amount of time off I have had. Anyway as I was saying, met Jennie and she had Danielle with her, Danielle really needed to see you as she wanted to understand why were so upset all the time, we came to the ward and Danielle was a little apprehensive they asked us to wait in the family room as you were having another heart echo, when they called us in she was good in front of you, you responded well, and we all settled down for an hour, the echo didn't show up anything and they can't understand why your heart rate is going up and down. All I can think is that you have been through so much you just need time to settle.

Jennie and Danielle went to mums after an hour or so as they had left Scott with mum. I stay with you, you started getting tired as we have been there a while you started to doze and so did I, I again had a quick sleep at the side of your bed whilst holding your hand, thus time though when  came round, Heloise your nurse had stern words with me, she knew it was Ed's birthday and she told me to go home and spend some time with Ed and try and get some sleep. I know I have run myself down but I wanted to be with you. I did leave about 5 and just as I left Paul came and saw you, so we met in the car park. So not a lot to report today, which is good as it means you are improving. Sorry for not being there all night with you. But I cooked Ed some dinner tonight first time in 2 weeks, so he is pleased and I will try and have an early night... See you tomorrow.

Day 17 Tuesday 24th October 2006.

Jennie called to say that you had a pretty good night, although your heart rate was high, she's worried as it is half term and she has promised to take Danielle and Scott to Alton Towers, I have promised her to keep her informed. I have to go to work as I am on a three day intensive management course, which I could do with out... Mother went to see you this morning and she then text me you had Supra-Ventricular tachycardia, which meant that your heart rate had gone seriously high, they needed to shock it back into a natural rhythm, they sedated you to do this and whilst sedated they took you for a MRI scan as well to see if he has a deep routed infection which is causing his BP to be so unstable. Mum text me this in the middle f my course, I hate to think if I will pass the exam on Thursday, my mind is not on it. I came to see you after the course and you where still out cold, they had started the dialyses to see if they could get the sedation out of your body, I stay for nearly four hours with mum but we had no response. I think this is all beginning to take its toll on me, I have a sore throat and my glands hurt, I can't get ill as they won't let me see you. The results of your MRI scan should be with us tomorrow, night night.

Day 18 Wednesday 25th October 2006.

Woke up this morning with full head cold, feel lousy, I know it's because I am run down a little, got the phone call from Jennie even though she is at Alton Towers with the children, she can't help herself, you had a stable night last night which is good. Went to work and sat through the course, actually I feel asleep through one bit, I'm trying to do too much, Mum came to see me at work at lunchtime, and she filled me in on what had happened this morning, the doctor came to see her and they had the results back from your scan, you have a little fluid on your lungs, but nothing to be concerned about you also have some gas in your stomach (nothing unusual there for you), they were talking about doing an operation (Laparoscopy) but they have decided to leave it for a few days and monitor it, they cannot find the cause for your BP problems and the only infection you have is in your lungs still. Mum also said that you hadn't woken up yet, but she thought you were sleeping as they had washed you, moved you and cleaned all your pipes and it's hard on your body.

I finished the course for the day and came straight to you, I wasn't sure that they would let me in because of the cold, but they don't mind, I think it's because you are already on antibiotics plus they don't want to deprive us of any time with you. When I arrived Gilly was there and she had been for 2 hours, she left shortly after I arrived. I sat and talked to you but you weren't going to wake up for me, your BP is low again today only 100/60 and drops under that, your heart rate is high at 142, I so wish you could stabilise these. Every now and again you would open you eyes slightly and look at me and then screw your face up, at first I thought you were in pain, then I realised it was every time I said something loud, silly thoughts then started going through my head, I thought that you didn't want me there and that you blame me for all this, I was getting myself really upset, I'm hoping that it isn't the reason and I'm sure that you were in pain or something. I know that I really need a break as things are getting to me now. I have to go and take this exam tomorrow, not that I have a hope in hell of passing it but I need to try for you. Then I will visit you again tomorrow night, but I think I will leave early and treat myself to an early night and a lot of cold remedies and knock myself out. You would really shout at me if you saw me, I know that I need to start looking after myself otherwise I can't look after you, I need a swift kick up the back side, Ed is nagging me and I need to start listening. Anyway enough about me, it's not what you will want to read when you wake up. I miss you so much... Night...

Day 19 Thursday 26th October 2006

Feeling lousy this morning, this cold has really taken hold, have exam today as well, the morning phone call from Jennie was positive, you had a good night, so I went to work like normal, finished course, and was waiting to take the exam, didn't want to until I had heard about you, couldn't get hold of mum in the end Jennie called and said that you were still asleep but OK. Sat the exam but with the cold and everything else I am unsure how I have done, I will find out in two weeks, but I can retake it, so it's not a problem, bet you thought you would never hear that from me, I know normal I can't abide failure but there are more important things to worry about... YOU..

Went straight to hospital and found Paul outside, we come into see you, Jennie was at your bedside, Your Paul stayed till about 5.30 but had to go home, all the time he was there you were shaky and kept trying to mumble words, it was like you were delirious, you are also a very bright yellow again, which means there is a problem with your liver, you still haven't come round from Tuesday and your blood pressure and heart rate are all over the place. We are all lost as you seem to have deteriorated again. About half an hour after Paul left you started to come round a little, Jennie had to go home abut 6.30, I stayed with you until 8pm, you still hadn't come round, now and again I would get your eyes open and then you would nod answers to questions but you are struggling. Your lungs are still heavily infected as I can feel the rasping when I put my hand on your chest. The nurses and doctors are trying everything with you but they are at a lose. Why are you doing this, I know you are fighting sometimes but I just want you to pull through this bit. I am going sick tomorrow, first day off sick in this job, well for me anyway.. I will come in after lunch so that mum can have some time on her own with you. I am giving in now and going to bed so that I can get better for you. Night..

Day 20 Friday 27th October 2006

No work today, stayed in bed until 12, I wasn't asleep but rested my back and felt a lot better, Jennie called late today but Ed spoke to her, you had a stable night, mum came to see you this morning, she gave you a bed bath today as the nurses were very busy, it kept her busy as well. She also had an argument with the pharmacist and then she saw the doctors, apparently they called you a nightmare, I can understand them. You just aren't behaving at the moment. I met mum at 1.30 and took over, you still haven't come round, now and again your eyes would open but nothing at all, Liz the physio came and worked on you, I was asking her questions because your right side especially your arm isn't moving at all, she can't verify it but I think you have had another stoke this week, you have deteriorated a lot over the last few days. You are still very yellow and your blood pressure is up and down. But my main worry is that you just haven't come round properly. I stayed with you for 5 hours and then went to mum's, she cooked me dinner as Ed is working. I stayed there until about 9.30 and came home. Spoke to Terry tonight on MSN, and have spoken to brother Paul and to Jennie, everyone is worried about you but we just do not know what is going on inside you, I wish you could talk and say how you feel, it would help us so much. Have asked mum to ask if you can have an EEG to determine any brain behaviour, this would show if you have had a stroke. mum will ask the doctors in the morning. I'm sure they have thought if this but it's more for me again than you, I know I sound so selfish.. Anyway it's gone 12 again and Ed has just got home, so I should spend some time with him, I will see you tomorrow. night night.

Day 21 Saturday 28th October 2006

Jennie didn't call this morning, she thought I needed the sleep which I did, Mum went to the hospital as normal in the morning to see you, I didn't get to you until 3pm, Gilly, Jennie, Danielle and Paulene were there, we took it in turns sitting with you, Danielle got a little upset today, I think it was more from what we were talking about, Jennie and I were discussing what you wanted now and what was best for you, I don't think she could handle it. They all left about 4, I stayed with you for a while longer, you weren't conscious again today, had nothing from you at all, this is becoming a habit. You are more yellow today than you have been, but your stats were pretty stable. The only change was you were releasing gas (that's the polite way for blowing off) and god you are worse than Bugle. If you carry that on you will poison the other people in there. There were no doctors about to talk to today and they were short staffed on the ward, they also lost one of the patients this afternoon, so we couldn't ask anyone about you. It's three weeks today and I don't know whether we are any further forward, I'm not sure how much more your body can take, I really wish I had more answers but as normal you don't seem to behave like anyone else, but we always knew you were special.... Time for me to go to bed again, I will see you tomorrow.

Day 22 Sunday 29th October 2006

Went to see Lynn and Mick this morning, setting up her new computer, Lynn's mother is in MK hospital as well so we drove in together this afternoon and I came to see you, there was absolutely no response from you today, although the nurse was positive and they are lowering your dependency on oxygen, you were on 18% when I arrived by the time I left you were down to 16% and if you reach 10% they will take you off the respirator. That can only be good news, now I need you to open your eyes properly and respond to me. You are still yellow and your still not absorbing food, it's now over three weeks and I'm starting to wonder if you will come round, I stayed with you for a couple of hours but you didn't know that I was there. I kissed you good night and come home. Very despondent tonight, I was hoping for more and you just aren't giving to me at the moment. I know I can be impatient at time.

Day 23 Monday 30th October 2006

Jennie phone and said that you had a stable night, I went to work today and managed a full day, I have to start working properly or else I think I will be in trouble. Text mum and she sounded quite positive about you today, so I was looking forward to seeing you after work. Came and saw you and you weren't with us at all, you eyes kept opening but you weren't focusing on anything at all, also your right arm was so swollen with fluid that it has started leaking from a wound on your hand. Your stomach is bloated and as hard as a brick and your blood pressure is only 97/52 which is really low, I stayed with you for a couple of hours and then I came home. I called mum and we swapped notes on you.

Mum said that during the night they had to increase your dependency of oxygen up to 20% and that she saw the doctor this morning and they are talking about an operation on your stomach to try and release some of this gas that has built up in there, we are unsure whether you will come through another general and so are the doctors so they are monitoring you closely but your stomach is so large and hard. Also they have put you back onto drugs to increase your blood pressure but it's still low. You didn't have the tube down your nose when I was there and you were retching a lot of the time, mum said it fell out this morning and that they hadn't put it back in we think that you are retching because they tube was taking the acid and bile out of your stomach. Your left arm is very thin but your right arm is swollen, they did say that although you have lots of fluid on your body it's in the wrong places and that you have been dehydrated, they are trying to control this with the dialyses but you are a complicated case, you aren't playing the game with us or the doctors, but saying that when mum was with you this morning you were a little bit conscious and mum asked if you could moved you right arm, you could slightly move your fingers but at least you tried. I think mum had worn you out this morning as you also had physio and they washed you and turned you, it's a lot to go through at once. Well, I shall come and see you tomorrow, I won't wish for anything and then if you are a little bit awake it will be a bonus. Night night.. x x

Day 24 Tuesday 31st October 2006

The day started as normal, you had been awake all night, your body clock is all wrong, but they said you are stable. The normal routine happened, Mum this morning, Jennie came in the afternoon and I visited you at 4.30, we now have a good system, we should have, it's been 3 and a half weeks nearly. You were completely sedated again when I got to you today, they had to do it to get your tube back into you, they had tried twice without and you hadn't liked it. This could mean that you will be asleep again for a few days. I getting so use to you ignoring me now, but I have to say it really is boring sitting there for hours but I'm not giving up yet.

Day 25 Wednesday 1st November 2006

Ok we are now into November and nothing has changed, I came to see you straight after work like normal, although I had seen Jennie this afternoon and she said that things weren't good, we are all pretty despondent these days, it's the not knowing that does it.  The hospital are saying that you have an infection that isn't treatable with the antibiotics that you have been on, you have a temperature of 39 and your stomach is still rock hard, your blood pressure is low only 96/48 and they think that they may be a hole in your stomach, I spoke to your Paul tonight to get a medical view on the situation, he thinks that it could be peritonitis, if it is then it's not good, he said that this sort of infection is very hard to clear up.  They are talking about scanning you and maybe operating on your stomach, something needs to be done as you can't carry on like this, but there again are you strong enough for another operation. Everything seems to be such a battle with you, it's one thing after another. In some ways I am still hoping that everything will be fine and I will get the old you back and then the next minute reality hits home and I look at you and think do you really want to live like this. As soon as I got to the hospital tonight I spoke to you quite loudly and your eyes started to  open, you were trying your hardest to open them fully but it was hard work, you did this a few times, then the nurses had to move you and did a few bits and pieces, after that I got no response at all until I left and again you tried. How much more can your body take I do not know. How much more can we cope with without a glimmer of hope I do not know either. I am trying so hard not to get depressed about this but it's hard, I am trying to do normal things but my mind keeps wandering back to you. I know I am tired and I know that I need to keep focused but I'm struggling, Ed has been great as normal, he's a good son in law and husband, you really would be pleased with him, he's trying his hardest to keep on top of things at home and work and keep an eye on me and that's not easy. He came to the hospital to meet me tonight as he finished work early. Your Paul also came to see you this morning, everyone is still doing there bit each day, so you have to as well. I just wish you could talk and let me know how you feel, even if the doctors could give me a little bit of hope I would feel better, but people aren't. Anyway I had better go and get ready for bed, it's late again and I haven't achieved a thing here tonight. Good night and I love you

Day 26 Thursday 2nd November 2006

This has been the worst day so far, you weren't at all well today, you are leaking fluid from all sorts of lesions on your body, your arms were wet with a nasty yellow liquid and your sheets were all stained yellow. You were completely asleep and no response at all and your BP was very low again, I sat with you for hours but then all of a sudden you opened your eyes so wide and stared straight through me, next second your BP over doubled to 190/100 even your nurse panicked a little, I had never seen you like this, it scared me and made me feel very uneasy, over the next 10 minutes you did it another 5 times. I didn't like it and in the end I had to go, I wasn't coping with you, you seemed to have calmed down a little when I bent over you to give you a kiss and then you did it again, it wasn't you looking at me, I have never seen a look like that in your eyes before. I left and went straight round to mums. She said that you hadn't been good whilst she was with you but you hadn't behaved like that. We really thought that tonight was going to be the end. We all prepared ourselves for the worst.

Day 27 Friday 3rd November 2006.

I didn't sleep at all last night, Paul, mum and Jennie all tried to sleep with their mobiles under their pillows waiting for a phone call, but it didn't come, you are having a scan at midday today to see what is going on in your stomach, Mum isn't allowed in to see your this morning because of this. I went to work although I was hopeless on no sleep. I called mum at 12 to see how she was and she was very tearful, so I left work and went there, Ed was also there and at 2pm we were allowed in to see you. You looked OK, you seemed quite settled and there was a little eye opening, which seemed to give us some hope, the results of your scan were unknown but we stayed with you for a few hours and it made us feel a lot more positive than yesterday, Ed thought you looked a little gaunt, but you were fine, I found some more places on your arms that you were leaking from and the nurse allowed me to put some dressings on you, I think they humour us sometimes. We left and went back to mums feeling a lot happier, although sitting at mums I had a searing pain go through my side, it was so strong it made me sob with tears, I can't get ill, I need to be there for you, it scared mum and Ed more and I promised them it was fine, I have to be there for you each day, I think it's just my appendix grumbling. Anyway we went home and I went straight to bed, I think the rest will be good for me.

Day 28 Saturday 4th November 2006.

We went to Jennies this morning, and Jennie and I came to see you this afternoon, we met mum in the car park....

She started crying as soon as she saw us, I went and hugged her, I had no idea what was going on, she said that the doctor had been to see her and had the results of the scan, they have decided that they are not going to do anything to you as there is no point, you aren't strong enough to go through an operation, they have also advised mum to put a note into your file to say do not resuscitate, which she has done. They said that your organs are starting to fail slowly, your heart isn't good, your liver is getting worse, your lungs are partially silent and now your gallbladder is also failing. They are going to keep up the treatment for now but they have advised that it won't be long. I don't understand this, you seemed better yesterday, you gave me hope and they have robbed me of that, it was the only thing keeping me going, I have no idea what to do now. Jennie and I still carried on and came into the hospital although I had to go to the toilets as I was retching, I tried to pull myself together as I didn't want you seeing me like this. We came and sat with your for a couple of hours, but we got nothing from you at all, the only thing I can say is that you looked so peaceful today, I think you look well, I know now that I am fooling myself, but I can't help it, I don't want to believe the doctors, I called Paul and tried to tell him but I couldn't, thankfully Jennie took the phone and spoke to him, my side is still as bad and everyone wants me to see a doctor, how can I, I'm not leaving you now, I need to be with you more now than before. I just hope they will understand, I know they are worried but I can't be worrying about me when you are like this, I will sort myself out in time, I know you would understand if you could. After we left the hospital Jennie and I went back to mums, she is still tearful, we talked for a while but we still don't know anymore, this is going to be the hardest waiting game I have ever played, on one hand I would like it to be quick so you don't suffer anymore but on the other hand, I want it to last a long time so we still have you but that is selfish. I just want to sob all the time. I hope you aren't in pain and the nurses don't think you are which is the only thing I can be thankful for, I will see you tomorrow, night night. x x

Day 29 Sunday 5th November 2006

The morning phone call came and you had a stable night, seems strange really but it still makes me feel hopeful, I had to go and see Nan today, Mum, Paul, Gilly and Mark were with you most of the morning and afternoon, Jennie and Danielle came in the afternoon and I was meeting them there, I stay with Nan until 4 and then headed up the motorway, I just wanted to be with you, there was an accident on the M1 and I sat in traffic for ages, you would be so angry with me as I could see my junction and just couldn't take it any longer I drove down the hard shoulder to the junction. I know it was stupid and I promise you that I will never do anything like that again, but I had to. I got to the hospital and Jennie came and met me, Paul had spoken to the doctor and they have said that they will turn off the support this week, we are not sure which day but they think it will be either tomorrow or Tuesday. In a way I know this is best, but I also can't handle it. We sat with you until 8pm your eyes were opened some of the time and we held your hands, we are convinced that you know we are there, the doctor doesn't think so, but we do and that is all that matters.

I went straight to see mum after to see how she is, she's not good at all, we sat there crying and trying to talk about things, it was so hard, we agree that they are making the right decisions for you but it doesn't make things any easier, I said that I need to be with you when they do it, Mum agrees so in the morning I will pick her up and drive her to the hospital, we will talk to the doctors and see what will happen. I don't know how I am going to cope with tomorrow but I need to be strong for mum and you.

I will see you in the morning, good night. x x x x

Day 30 Monday 6th November 2006

Jennie, Paul, Ed and I met at Mums this morning, Jennie, Mum and I came to the hospital to see you, you looked really content today, no different from yesterday. The doctor asked to see us as soon as we got to you, he took us into his office and sat us down, and started to talk, he said that today they would stop all support, we started to sob so hard that I retched, we know it is the only thing for you but it's so hard to hear, we agreed with the doctor and at 12.00pm they turned of the filtration dialysis and the adrenaline, the only thing they left running was the ventilator. The three of us sat with you holding your hands and waited, it was unbearable, we weren't coping at all. At 6.30pm tonight your heart finally gave out and you stopped breathing, we all kissed you between sobbing so hard. We know that you are now in a better place, and are finally peaceful. How we are going to cope without you I do not know, I love you so much as does everyone else. We couldn't see you like that anymore and I am sure you are at peace now. I am going to stay with mum as she is missing you so much already, I think it is best. I know you will be watching over us and I will make sure she is OK. Good night you x x x


For anyone reading this, please could you not contact either mum or myself for a couple of days, I will be in touch as soon as possible and I will let everyone know the details of the funeral as soon as we know. But we need a couple of days to sort ourselves out and I am sure you will all understand. Thank you all for your supportive emails and texts over the past month, we know that there are a lot of people around the world reading this and I am so sorry that you have to read the last passage but I felt that it was the best way to keep everyone informed. Thank you Helen and Jean x x x

The funeral details have now been added to the Home page, please click on the link on the top left. Thank you.

Saturday 19th November 2006

Well it's been a week or two since I visited this page, too many emotions have been going through me to add anything on here, I have been angry, upset and stressed. I haven't been able to talk to people and the ones I have spoken to sometimes I have bitten back with comments when I should have let them go over my head.

We had the funeral on Friday and I have to say what a lovely turn out it was, you would have been so proud, it's a pity that people don't actually get to see their own funerals, sometimes it would surprise them. The old boys that you were in the Military Police with, did a guard of honour and had the standard flying, that was actually the hardest bit for some of us. The Vicar did a wonderful speech and everyone sang the hymns. It was over very quickly and then we headed back to mums, allsorts of people had turned up and it was very hard to say hello to everyone, I think I missed so many. It's strange in a way, it seemed that we were not only saying goodbye to you but to a few others, somehow it ends an era in the family, there is no connection now between the children, the common bond has been taken away, somehow I don't think we will hear from some of them again.

I am going to do a memory page for us about you, so whenever we feel down or just need to talk to you, then we have somewhere with photos and stories on, it's a lasting memory to you. I know you would laugh at us, but I need to do it, I will ask everyone who knew you to send something to contribute, you never know I might find out secrets from your past, hopefully soon we will have quite a collection to choose from.