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. |