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Friday, January 27th 2012

9:43 AM

Sitting up is so hard to do.

I haven't updated for a couple of days mainly because I haven't felt like it. Once I get home, it's all i can do to try and think of something else for a while. All I seem to do now is get home, have my dinner, catch up on a little Sky+ and then watch a DVD.

Wednesday was quite a difficult day, as Bill was in quite a bit of pain in dialysis, and afterwards as well. I am trying to encourage him to shift in the bed, but it was so hard to do. All I wanted was to put the back of the bed in a sit up position so his back and stomach muscles have to work a little. It put him in pain almost immediately, even though I was imploring with him to try and stand it for a while. In the end, I got quite upset, and had to put the bed back down before leaving an hour earlier than usual.

When I got in yesterday, we had a bit of a talk, and Bill laid down his worries, so I got hold of the ward sister to go through a few things. The pain management team has been called in, and hopefully, they will come up with a solution to make it less painful for him to sit up, and also deal with a leg pain he has been getting in his left leg. The physio team came in and gave him quite a workout for 10 - 15 minutes, and it really wore him out. I want to try and get him sat up in bed for 20 minutes every other hour or so, and try and build up his stomach and back muscles. I have tried setting a goal to see if that works. His New England Patriots are in the Superbowl next weekend, and it would be nice if he could watch at least some of it sitting up. It is nice to have goals, but I also have to not get upset if he doesn't reach them. I can't do any of the work, all I can do is encourage.

The physio must have worked in some ways, as when I got in this morning, he told me that he had the best night's sleep for a long time which is always nice to hear.

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Tuesday, January 24th 2012

6:06 PM

Time for sitting up.

An average couple of days with not much happening. The physios came in today and got him moving around the bed, finding out just how much he needs moving. He has been told that he can only lie down now when he goes to sleep, and the rest of the time, the bed has to be in the sitting up position. Apparently, that will stretch his muscles sufficiently over time to enable him to sit up  on the edge of the bed on his own steam. 

The surgeon who amputated his leg came round to look at him whilst I was out, and said that he is happy with how it looks. He also told Bill that it was the trickiest amputation he had done for some time. No shock there, as nothing has ever been easy on this ride.

Today, the Occupational Therapist came here to measure up door sizes and gauge what needs to be done to make it possible for Bill to come home. The main problem looks like being the bedroom, but she said she will try and see how we can manage without too much of a move.
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Sunday, January 22nd 2012

5:44 PM

Worn out.

Not the best couple of days, but by far from the worst. I think the physical toll of having dialysis for 6 days running caught up with Bill, as he has been exhausted for the weekend. It has been hard to keep his attention when I'm reading him the news and sports, and I'm sure my monotone voice doesnt help matters too much. I think he deserves a bit of time where he doesn't have to worry about anyone coming in to do anything, so I'll only start to try and keep him up tomorrow. I would like to get the physios working on him to get him stretching and moving again. It'd be nice if they managed to get him sitting up in the armchair sometime this week.

In the 'time-for-myself' bracket, Mum and I went out for a great Indian meal last night. I used to have about one a week, but for some reason, this was the first one I have had for about a year. I have also got some concerts on the horizon, and it'll be good to go out to those and see some friends I haven't seen for a while. I would normally follow a couple of the tours around, but I am just a 'London only' gig-goer for now. For that reason, I decided to splash out on the meet and greet with Shinedown. They know me, but to try and say hello at the London show would be impossible without the meet and greet option. Halestorn are also playing at that show, and I hope to bump in to them and say hello as well.
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Friday, January 20th 2012

1:11 PM

A busy day.

It turned out to be quite a busy day for Bill, and it all worked out quite well. Even though he was only seen by 3 or 4 teams, it felt like there was a steady procession coming in to his room to do something. Once again, he had an early dialysis, and another couple of litres were taken off. For the last 30 minutes, we went through Bill's medical history with a student doctor. When he asked if he had a spare couple of minutes, I said that he'd need a spare couple of days. It's always nice to help out with the students, and give them a bit of hands-on experience that they can't get out of a book.

When we got back to the room, the physios came a couple of times. First, they got him moving around and sat up on the side of the bed. They are trying to get him to stretch out his shoulders and get him to look at the ceiling. They said that he has become "bed-shaped", and they are trying to reverse it. They came back in with a splint for his left hand, and I'm so pleased about that. It's an old problem, and I hadn't even thought of it being dealt with on this hospital stay. His arm has been swollen to bursting point recently, but with the amount of fluid coming off, it has loosened up his left arm a touch. His left hand has been permanently in a fist position for the last few months, and this splint spreads out his fingers so they are a lot straighter. Whilst he has it on, he says it is uncomfortable rather than painful.

One of the vascular team then came in to look at the stump, and said that it looked fine. I asked about the redness of the skin, and he said that as it was the end of that section of skin, it would be red. I was so pleased to hear this, as it has almost been forgotten about with all the other problems taking over.

Lastly, one of the Occupational Therapists came in. She just asked us questions about our flat, and will one day come round to see how we can make it possible for Bill to come home. With the bathroom set up for me, that won't be a problem. I guess the other rooms will need looking at, and the main problem will be the bedroom as there's not a huge amount of room for manoeuvre there. I think a few grab bars will be fitted, but the main adaptation I want is for the front step of our block to be ramped. It's the only step, and whilst I have requested it for myself, they wouldn't do it because I am not wheelchair bound. As I think it will be quite some time before Bill even thinks of a prosthetic leg, I can't see why we won't be able to have the ramp installed.

One of the best positives of the day was when the physios had finished with Bill, they didn't put his oxygen back on. They wanted to leave it for 10 minutes, and see what his oxygen saturation was like. I was so surprised to see it at 95%, and chuffed to pieces that he no longer needs to have an oxygen tube around his ears and up his  nose.

When I left, there wasn't too much I wanted to do at home, so I thought I might as well make another trip to the cinema. I have wanted to see The Girl With The Dragon Tattoo since it came out, as I am quite a fan of the story. Bill and I have both read and enjoyed the trilogy by Stieg Larsson, and seen the Swedish version of the films. Whilst this Hollywood remake was good, it didn't offer anything more than the original film. I still enjoyed it though, and I guess that's all that really matters. I think I'll give the cinema a rest for a few days now. It is nice that there seems to be a few films I want to see, so I guess I'll pop along again next week.

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Thursday, January 19th 2012

6:24 AM

Small steps the right way.

I didn't get a chance to update yesterday even though on the whole, it was quite a positive day. When I got in, he was already washed and had his breakfast as they wanted to get him in dialysis early. Regular dialysis days have him in for 4 hours, but as he is having it done daily, this session was for 3 hours. They extracted another 3 litres, and I did get around to asking where this had all come from. The doctor said that as his fluids haven't been in check for some time, they have just been sitting around his body for some time. As he is currently permanently on his back, it is where the fluids have settled. He is confident that with the daily dialysis treatments and fluid restrictions will eventually sort out the problem. He said he wanted to review the daily dialysis situation on Friday with another x-ray of his chest area, although after listening to his chest, he said that it could go on in to next week.

The physios came in, and first got him to do a few breathing exercises, which along with the nebuliser should loosen the junk that is on his lungs. With the suction tube, he managed to cough up quite a bit. I'm just there to flush the tube, and some coughs really are quite productive. Another couple of physios then came in, and brought in an armchair that will make it easier for him to transfer in to. He is not ready for the chair yet, but they managed to get him sat up on the edge of the bed. It has been the first time he has sat up in what feels like forever, so it was little surprise that he was a little light-headed and didn't last for too long.

So quite a productive day, and although they are small steps, they were at least taken in the right direction, and I'll take a day like that any day!

I managed to get a bit of time to myself when Bill was in dialysis which was nice. There is a cinema about half a mile away from the hospital, so I decided to head over there and see a film. I was surprised that some films were shown in the morning, so thought I might as well go when Bill was in dialysis. I wanted to see The Girl With The Dragon Tattoo, but that started a bit too late for my timing. In the end, I went to see the ice hockey flick 'Goon' with Seann William Scott of American Pie fame. If he wasn't in it, I doubt it would have even been released over here. I really enjoyed it, even though all it really is, is a modern day version of Slap Shot. One thing did take me by surprise - it's the first time I have been to the cinema for some time - my drink and popcorn actually cost more than entry to see the film. £bloody8 for a popcorn and a drink, so I think I'll be trying to smuggle stuff in now. It's nice to know I can pop out for a couple of hours, and I may even go again today.

Last night, he had an ok night. Nothing good happened, but nothing bad either.
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Tuesday, January 17th 2012

8:03 PM

Better than yesterday.

A better day today thankfully. I feel better after we talked to a doctor this morning, and although I feel a bit better, Bill said he would only feel better when he feels better. 

When I got in this morning, he had just had his wash, and just that had worn him out. The doctor came round not long after, and we asked if there would be a way through this mess, and he seemed quite positive that there was. He said that for now, they would do dialysis on a daily basis - on the irregular days, he is to go in for 2 hours. Then the physio came round and set up the dentist suction tube and gave him some breathing exercises that, along with the nebuliser, should loosen up all the crap that is sitting on his lungs. This should free him up, and hopefully, we’ll see how it goes from there. 

I keep meaning to ask the doctor where all the fluid is coming from, as he is only on a 500ml a day limit. At yesterday’s regular session, just over 4 litres came off, and at today’s impromptu 2 hour session, just over another 2 litres came off. I’ll update this when I get the answer - I just hope I understand it.
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Monday, January 16th 2012

8:13 PM

Another bad day

I can’t dress it up - today was a truly terrible day. Bill got one of the nurses to call me at 6am so I could go in and be with him. When I got there, he was once again short of breath, and they were giving him all sorts of oxygen masks to bring up his blood oxygen levels. That stabilised things for a while, and then they got him downstairs to have an early dialysis which did ease the problem. Mum came in to keep me company, and I have to say that I fell apart a couple of times. This is by far the hardest thing I have ever gone through, and it seems like a nightmare that I just can’t wake up from. I feel so helpless as there’s so much I want to do for Bill, but just can’t. I am there for him as much as I can be, and that’s all I can do. 

When we got back to his room on the ward, his numbers were good enough to not have to call in the HDU staff, but he had another panic attack which are so unpredictable. 

I didn’t think I’d bare my soul on here, but my heart is breaking, and there’s nothing I can do to stop it.
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Sunday, January 15th 2012

2:13 PM

Hard going

It has been a tough couple of days. I am glad to say that on Friday, he was moved out of the High Dependency unit and back in to a side room of a regular ward. After that, he has seemed to suffer from rather distressing panic attacks. Apparently, they started almost as soon as I left on Friday night. I went back in to take him some food, and he didn't seem too fantastic, but I put that one down to being the post-dialysis feeling he sometimes get. He called me early on Saturday morning and asked me to go in, and sounded in a bit of a state. I reached the hospital in about 20 minutes, and he seemed calmer, but that only lasted for about an hour. After that, a fully fledged panic attack started, and lasted for hours. At 8am, I requested that a doctor come to see him, and knowing it was Saturday, I wasn't expecting one any time soon. As his vital signs were OK, he was not down as a priority, but I didn't expect to have to wait 9 hours to see a doctor. I was so incensed, I wrote a letter to our Member of Parliament, and asked how every industry except health care arranges cover for weekends. When the doctor finally did come round, they went through his notes and prescribed him a pain killer that had a mild sedative. It did the job after some time, and I am pleased to say that he managed to get some sleep.

I went in early again this morning, and was pleased to see him looking so peaceful as he was still fast asleep. He woke up 30 minutes later, and it really did take him a while to get going. I think the effects of yesterday are still having an effect on him as he was so worn out even when awake. I have been hoping that the road was going to get a little easier, but it just seems to be getting harder and harder.
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Thursday, January 12th 2012

8:57 PM

Panic attack

Another couple of days with a mixture of good and bad, but not with much sway on either side. He is still on the HDU ward, and waiting for a side room on the regular ward which is a little annoying. I hope they manage to move him in the next day or so. The worst part of today was that Bill had a panic attack that lasted for about 3 or 4 hours. It was horrible as there was absolutely nothing I could do to make him feel better. He didn’t have a good night’s sleep either as he got a nose bleed that took a long time to stop. It was down to the oxygen tubes being up his nose for so long which has apparently dried out the inside of his nostrils. They have him back on a mask for a while, but it’s just to avoid further episodes. 

He had a good time at dialysis yesterday - I know that sounds funny, but it gets him out of the ward, and he can talk to a lot of the friends he has made over the years. There was even a point when the sister of the unit had to get the staff to leave him as they were all around his bed chatting away. He has another session tomorrow, so he’ll get out again. One of his friends there has just had an operation to have his remaining leg amputated. He is such a lovely bloke, and has managed to pick Bill up when he has been feeling down. Even though he has just had his last leg removed, he actually wanted it to happen as he was having so many problems with his foot. 

I have taken in his iPad, and apart from having a problem with the initial stand it came with, he is making use of it. Once he gets used to it, I think he’ll be on it a lot more - right now, it’s just Kindle, solitaire and a bit of radio.

I’m feeling kind of down tonight, and I’m hoping that a film that is coming on will cheer me up. Dumb & Dumber normally makes me chuckle, and I hope it does the job tonight.  
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Tuesday, January 10th 2012

9:38 PM

Soon to be moving.

Bill was OK today. He was feeling good all morning, but didn’t feel so hot in the afternoon. The good news is that they are waiting for a bed on the regular ward and he will be moving back upstairs as soon as there is space available. He has asked me to take in his iPad, so I have downloaded a load of programs he likes - I’ve also put his Kindle books on there too. I’m always happy when he wants to do something other than think of his situation. 

The nurses in the HDU have been exceptionally good - one of them who was working in the intensive care unit today even came over when I was in the canteen to ask how Bill was doing.

As Bill has got to a stable situation again, I guess I won’t be updating this every day, but will update when any major ups or downs occur.
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Monday, January 9th 2012

8:34 PM

First good day for a while :)

I had to go in late today as we were having our annual gas boiler check over. When I got in the hospital, I almost melted when I saw Bill’s smile. I could tell that he had a good night, and he confirmed it straight away. 

It was a busy old time, as the doctors came along, as well as the wounds nurse and even his lunch appeared. The doctors were pleased with his progress, and it’s easy to see. His breathing is pretty much back to normal, and he is only on a regular oxygen now - just the one with the nasal pipes rather than a mask. The wounds nurse was also pleased with how his stump looked. I didn’t know if I could handle it, but I looked at it and didn’t even come close to passing out. It looks fine, albeit with a lot of staples, and nowhere near as angry as I though it would be. 

With my bravery medals strapped to my chest, I went off to get Bill some late night food, as all they bring around are sandwiches. He was off to dialysis, and I was so pleased that he could get back to that on a regular basis. 

He got through dialysis fine apart from a bit of a low blood sugar moment at the end of it all. He was meant to have a diabetes nurse come and see him before this latest HDU episode, so I requested that one come and see him tomorrow. As his eating is erratic due to different meal times and lack of suitable food, we want to know the best amount of insulin to take according to whatever blood sugar level he is at.

The first good day in quite a while, and I’ll take any of those that are going Bill’s way. As I’ve said before, I won’t get carried away as there’s probably a bad day waiting around the corner.
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Sunday, January 8th 2012

9:50 PM

Update for Sunday.

An OK day in all, although there were a couple of moments where Bill was in a lot of pain in his left leg. I don’t know if it was his positioning on the bed or a nerve pain, but it was soon calmed down with movement and some pain killers. A vascular surgeon was on hand, and he said that there was good circulation and the leg was warm, so it was fine. It took a while for Bill to calm down, but he got there in the end.

His breathing has calmed down a hell of a lot, and he has been on a regular oxygen mask all day. The doctors told me that they would leave the drain pipe in his lung for another day before removing it. Then a physio came around to see if she could get him to loosen up some of the phlegm sitting on his lung. She spoke to me about the liquid, and said that since his leg came off, the extra fluid just had to find another place to go. Bill’s right leg was always huge as that’s where the excess liquid used to go, and I didn’t even think that it could be that. With the regular dialysis and a bit better liquid control, he should be able to minimise the risk of this happening again. She also put him on a nebuliser that should calm down his coughing and loosen up what is left on his chest. She did say that there didn’t look to be any sign of infection, but I’ll wait until a test comes back to confirm that.

As it was a Sunday, I went over to see the Romford Raiders take on the Streatham Redskins to try and take my mind off things. It didn’t work too well - I enjoyed the game as Romford won 7-4, but my mind kept wandering back to Bill. I just want him back home with me, but I am so aware that it’ll be some time before that happens. I popped back in to hospital to see him before I came home, and he was sound asleep and looking quite peaceful. I stayed for about 20 minutes before heading back home.
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Saturday, January 7th 2012

9:10 PM

A bit of good, a bit of bad.

A mixture of a day here - some good news, some not-so-good news.

I managed to get a good night’s sleep for the first time in a while, so I wasn’t at the hospital until about 9am. When I got in, he was still asleep, so once again, I asked how he got on with the nurse. He was still on the cpap, and another litre of fluid had drained from the outside of his lung. That makes a total of 3.3 litres now which is quite incredible - no wonder he couldn’t breathe.

The not-so-good news came first, and that was when I found out that he has developed an MRSA bug on the stump of his leg. The doctor told me that it is common on vascular patients, especially when they have been on anti-biotics for some time (Bill has been on some form of anti-biotic for the 4 weeks he has been in there). The bug just evolves until it is resistant to anything that is thrown at it. The best they can do for now is keep the area clean with cleansing fluid and cream.

I asked her about the line from his lung, and she said that it would be there for another day or two to see how much more there was. Another x-ray was taken today, so that will give them a better idea. I also asked how long he would need the cpap mask, and this is where the good news comes in. She told me that they would decrease the pressure from 7.5cm down to 5cm, and see how he coped with that. When lunch came around, he had to take the mask off and put in the small pipes that go up each nostril, and his oxygen numbers didn’t come down at all. I was with him for an hour with just those pipes on, and his breathing was fine. I had to leave for a while as they told me they were going to freshen him up, and when I went back an hour later, he still had just the pipes on. They ran a blood test to check his oxygen numbers, and they were fine, so he is now able to use regular oxygen supply rather than a cpap. I am so relieved about that, and he has also started coughing up crap as well which will free the lungs even more.

Between 3 & 5, the HDU ward has no visitors, so I just go off for a while and play on the iPad or read. When I got back, I was so pleased to hear that his first question was how the O’s did. That’s always a sign that he feels better, and it’s just a shame that we got thumped 4-1 away at Carlisle.

One amusing thing did happen today as I was journeying around the hospital on my scooter. I keep bumping in to the guy who went a bit crazy the night Bill had his leg off. He is in a wheelchair and has to use his right leg to propel himself, so it takes him forever to get anywhere. I have got used to him, and it seems that he is an autistic man who also suffers from tourettes syndrome. He always says hello to me when we pass and sticks his thumb up, but other than that, his vocabulary is limited to “fucking bollocks”. Everyone on the ward is aware of it, but when I went past him today on the ground floor, he didn’t half get some looks when people passed. He was pointing at my scooter, and then at his wheelchair, and I could tell that he meant that mine was not such hard work. All that came out was “fucking bollocks, bollocks, bollocks” followed by several more “bollocks”. He is ok once you get used to the vocabulary, but he is a bit of a pain in the arse as he tries to smoke everywhere - he has been caught smoking in the toilets so much, they closed one of them down. At least now he hauls himself out to the front of the hospital.

I’d like to end today’s post by thanking people for the messages of support. I have had best wishes from all over the UK & USA, and it’s nice to know that so many people are thinking of Bill and I at this rather difficult time.
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Friday, January 6th 2012

7:02 PM

Update.

When I called the ward last night before I went to bed, I was disappointed to hear that no more fluid had been removed, and it still stood at 1.3 litres. Bill was still on his cpap mask, and only managed a couple of hours with a regular mask. When I went in this morning, he was still asleep, so I left him to it until 7:30, when the night shift nurse came out to talk to me. She said that she had drained off another litre of fluid, meaning a total of 2.3 litres came off Bill’s lung.

I wish it meant an immediate improvement in his breathing, but he is still reliant on the cpap, and when he has switched to a regular mask, a panic seemed to set in, and it was like he was out of breath.

The thing I was worried about today was whether they would do dialysis, and how they’d do it. The doctor told me that with a removal of 2.3 litres, that was similar to a dialysis treatment, even though it shouldn’t normally come from a lung. A blood test showed that he was still doing OK, but at 5 this afternoon, they took him off to do a 2 hour dialysis in his regular unit. They did it to try and get around the weekend, as if he needs a dialysis over the weekend, they will have to insert tubes in his neck, as the regular unit is not staffed. His fluid intake has been restricted, and that will temporarily help matters too. I had hoped to see an improvement in his breathing, but he is still finding it hard work. At the moment, I don’t know if the lungs need time to recover after a saturation like that or if there is anything else going on. I’ll see if I can grab a doctor to answer that question over the weekend.
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Thursday, January 5th 2012

8:23 PM

A LOT of fluid!

This has been another tough day. It feels like I have had to crack heads to get stuff done despite the doctor telling me that everything was in place. He needed some more blood, but there was no one in the HDU who was authorised to sign for it. I was so angry about that, I had to speak to the head nurse, and as he saw a doctor walking through, he got him to sign it and 10 minutes later the blood was there. I then had the doctor looking after Bill telling me that it was all in place and he would have got it anyway. It just doesn't feel like that. I honestly think that things only get done when you start stamping your feet. It shouldn't be that way, but it's the way it feels to me.

In the end, at about 2:30pm, the radiologist came along with the scanner as I was sitting in the waiting room outside, so I just popped in to let Bill know that I was still there, and would be just outside. Speaking to the doctor earlier, she told me that it could be a very uncomfortable experience, but I was just happy that it was all going ahead. I was told to come back in 2 hours, so I went off for a late lunch, and was glad to have the games on the iPad to take my mind of it. 

Back in the waiting room about 90 minutes later, the doctor came in to tell me that they had drained off a litre of fluid already and that there was about another two litres to go. (For my American friends, that’s a total of about ¾ gallon). They had to give an hour’s rest between each litre, and when I left, they had relieved Bill of 1.3 litres of fluid. No wonder he couldn’t breathe! I hope that they manage to get it all out and it does improve his breathing. He still had the cpap mask on when I left, but from what I understand, it’s to inflate his lung again after being crushed by all that body fluid.

Tomorrow is another day, and I can only hope that Bill is able to go to a regular dialysis rather than have tubes stuck in his neck. All I am dreaming about at the moment is for Bill to be well enough to be moved back to a general ward.
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Wednesday, January 4th 2012

9:17 PM

CPAP

As Bill is now in the HDU, it meant I was able to visit when I woke up, so I got in there at 6am. He had a CPAP mask on which meant that he was able to breathe a little easier. It pushes oxygen in to his lungs and expands them more. The only problem is that the mask is not particularly comfortable, but when they substitute it for a regular mask for a brief while, he struggles to breathe again. I was pleased to see that he was stable, and seemed better than the day before, and at least got a little sleep.

As the visiting hours ended at 3, I don’t know if they have performed what they said they would do. They were going to perform an ultrasound, as they thought that there was a fluid build up around his left lung rather than an infection. If that was the case, they were then going to drain that fluid. As he was due for a dialysis session, they checked his blood numbers to see that it wasn’t imperative that it was done today. In HDU, they insert their own tubes in the neck, so they only want to do it as a last resort. It is hoped that if the fluid is removed, his breathing will improve enough to be able to go to the regular dialysis unit.

The positive of the day is that his breathing rate has calmed down quite a bit. He was taking up to 40 breaths a minute yesterday, but it was averaging out about 25 by the time I left today. That of course is because of the CPAP, but to see him not struggling as much was welcome.
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Tuesday, January 3rd 2012

9:23 PM

Worst. Day. Ever.

I can't believe the difference less than 24 hours can make. Last night, when I spoke to Bill, we were talking about ice hockey and college football, and he sounded great. This morning, I get in to the hospital and see a team of nurses and a doctor around his bed. The overnight nurse spotted that he was having difficulty breathing at about 6am, and he wasn't reacting to the usual amount of oxygen they were giving him. I am pleased that Bill knew who I was, but it was obvious to see that he was confused with what was going on, and the busyness around his bed.

They had taken x-rays, and it showed that he had an infection that has almost taken over his left lung. It hadn't shown up on the x-rays on Sunday, but I guess that the infection was just getting going. As the day went on, he became more alert, and was mentally back to normal after a few hours, but that made it worse for him, as he realised how much trouble he was having just breathing. They have just taken him down to the High Dependency Unit where he wil receive 1 on 1 care, and I hope they weren't bullshitting me when they said that they have better equipment to help with his breathing.

I have just left him with them, and will let them take their first observations before I pop in and say goodnight to him. This is the hardest road I have ever travelled - I am trying my best to be strong for him, but I am finding it increasingly harder and harder to do. I love him so much, and to see him in such distress is breaking my heart. All I hope is that next time I drop a line on here, it will be better news.
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Monday, January 2nd 2012

8:02 PM

Good days, bad days.

I haven't said it yet, but I hope everyone who reads this has a happy and healthy 2012. 

Things are OK here - I won't go in to it too much, but will say that there have been good days and the inevitable bad days. I am trying my best not to get carried away with either kind - I have taken the good days too literally, and when things didn't pan out, it was like the proverbial kick in the knackers. I am also trying not to get too despondent on the bad days, which is pretty hard. I am just trying my best to stay strong for Bill, and the last thing he needs is a sobbing wreck at the end of the bed when things aren't going so well. I got Mum to take this picture, and you can probably tell that this was on a good day.


As I type, he is in dialysis, and we are hoping that the removal of liquid will improve his breathing. We called in doctors and physios yesterday as he was a little short of breath (not struggling, just shallow breaths). The doctors sent him for a chest x-ray which didn't show anything, and the physios sat him up which helped with his breathing. I was amazed to get either as not only was it Sunday, it was New Year's Day as well. When he called this morning, he sounded much better, but when I got in, he was short of breath again. The nurse told me that he was sat up when he called, which does point to a bit of liquid on his lungs. I am not tempting fate, but dialysis should clear that, and he'll have to watch his liquid intake from now on. He is on more liquid than usual with the just the laxative taking a couple of cups a day. On the drugs front, I am pleased to say that he hasn't had any drastic pain relief for a couple of days. They gave him something called Oxynorm, and it had a rather nasty side effect that led to terrible nightmares. He hasn't felt the need to take anything stronger than paracetamol and pregabalin, so he is actually on less than when he came in here.

We have both plumped for an IPad for Christmas gifts - I bought Bill one, and as he hasn't had much use for it, I set it up for him. Of course that led to me having a bit of a play with it, and I absolutely love it!!! I remember when I said that I would never buy anything that started with an 'I', but I couldn't help myself. It's such a smart piece of kit, and since Bill hasn't been able to shop, he said I could go and get one as a gift from him. I have fallen for it hook line and sinker - it is such a great piece of kit. I love being able to look at any site anywhere, and some of the games are stupendously entertaining. I like that fact that I can also download old TV programmes as well as a lot of films, so it will be great when I head out on my travels again. Talking of which, Bill is fine with me taking a day out to head up to Manchester in a week or so to see the mighty Chickenfoot. It'll be the first hospital day I have missed for a month, and I'm sure he'll survive without me. Of course we now have our IPads to keep in touch video wise, so all he will miss will be the hot food I take in.

Now I’m home and he has finished dialysis, I am pleased to say that he is feeling better, and his breathing has returned to normal.

I’ll finish this one with a bit of a moan. The handicapped parking at Queen’s Hospital is probably the most abused I have ever seen. Anyone would think it was an “I Know Someone Who Is Disabled” car park, as most users I have seen have nothing wrong with them. I know there are people who will be going in to pick up someone who is disabled, but most are just using someone else’s badge so they don’t have to pay to use the main car park. There has also been a lot of people just parking with no blue badge at all, and they are the ones who assume that as it is a bank holiday or a Sunday, they are allowed to park there. I would love to let them know that disabled people DON’T get a day off - on Sundays, I am just as disabled as I am for the rest of the week.
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Friday, December 30th 2011

9:04 PM

Finally sitting up!

I'm sure this will be my last entry of the year unless something drastic happens. The last few days have tipped towards 'OK' on the register - Wednesday's dialysis which I was dreading didn't turn out to be too bad for Bill, and I got a bit of an early night which I really needed. The best thing to happen so far is that yesterday, the physios finally came round and got him out of bed. I had to get out of the room, as me and my scooter were just getting in the way, so I went and sat in the corridor around the corner. As always, I got chatting to someone else, and it was another guy with only one leg who was in visiting his wife. In the middle of the conversation, I heard Bill yell my name, and I thought he was in trouble. When I got round to his room, I was so pleased to see him sitting up in a chair for the first time in a week. It seemed that my reaction made him feel much better about it as well. He wanted a picture taken that showed his stump, and was quite happy for me to post it on here. He does look better than this in person, and once again, I'm blaming the camera on my phone for such a a crappy photo.


There are still moments though when it all doesn't go according to plan as Mike found out when he came in to visit in the afternoon. I left them both catching up and went to see friends I have made on the next ward down. It's a guy who was in the next bed to Bill when they were both in intensive care, and his wife and I have struck up a bond. We have had a few cries on each others shoulders when the chips have been down, and it's nice to have someone that is going through the same sort of thing. After I finished chatting, I went back to Bill's room, and he looked terrible. I didn't think about his blood sugar, but apparently it dropped to about 2 (I think that's 34 on the USA scale), so we had glucose tablets and orange juice on hand to bring it back up to a normal level. We have requested that he is seen by a diabetic nurse so they can look at his insulin dosages. His eating habits have changed dramatically over the last few months, and now with the no teeth scenario, it has changed even further. I am pretty sure that when he is seen, they will bring the dosage down, or maybe even get him to have 4 injections instead of the 2 he currently administers.

Once he was seen to and better, Mike and I headed over to Nando’s, and then off to the local bar for a beer or two. We were joined by Chalky, Nigel and Maggie, and it was quite a nice opportunity to take my mind off the hospital for a while.

Today was another OK day - he has had trouble with nightmares, and I think it must be something to do with the concoction of drugs he is on. He has been taken off the syringe, and is now on quite a strong oral painkiller.

I was going to head in to town, but I’m glad I didn’t now. I’m knackered! I hope to get up there soon as I haven’t seen Sonny or Hugh for ages.
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Tuesday, December 27th 2011

4:26 PM

Christmas woe at the hospital.

It has been a pretty hard couple of days for both Bill and I since the operation. When I went in on Christmas Day, I was dreading what I was going in to. I spoke to the nurse at 11pm, a few hours after the op, and she said that he was doing fine. However, when I spoke to her at 6am on Christmas morning, she sounded completely different, and totally worn out. She told me that they had to move Bill to a side room because of an “unmanageable patient”. When I got in to the hospital, I saw the day nurse at the pharmacy and asked her if he was ok, and I was so glad to hear that he was. When I got up there, he was awake, and whilst in pain, it was nowhere near as bad. I even got a few smiles out of him when I was talking to him, and then I gave him his presents even though they aren’t much use to him at the moment. The unmanageable patient was a guy who went a little mad in the night, and Bill wanted either of them moved so he was away from him. In the end, she moved Bill in to a side room, so he now has a room on his own. I know sometimes that is welcome, but for a while, it can get very boring. Presently that doesn't matter as he isn't up for any conversation, but as he improves, he'll need to interact with others.

They brought round a turkey dinner, which wasn’t a lot of use as he still has no teeth, so Bill had to cope with the spaghetti rings I took in. He did make use of the Christmas cracker they gave him, and joined in the spirit of things by wearing the hat.


I did get a little bit of a Christmas after that as I went round to Mum’s where most of the family were. It was much needed, as I had a great dinner and a few beers to wash it down with. I also managed to get out a good laugh as for some reason, there was a lot of finger goggle wearing going on whilst singing the Dambusters tune for some reason. I have no idea how it started, but it was great to be able to laugh for the first time in a while.

Yesterday was a different story though, as it was the proverbial day from hell. He had gone 3 days without dialysis, so was due in to go in as normal to have it done. The main painkiller he is on is kept on a syringe that he can operate when he needs it, but with dialysis, it gets washed out of the blood. Dialysis lasts for 4 hours, but with portering issues, he was down in the dialysis unit for almost 7 hours. After the dialysis was completed, he waited 90 minutes for a porter to bring him back to the room which just isn’t on. (they gave me all the “bank holiday” crap, but it was only after I got them to call the site manager that a porter appeared. A complaint has also been filed, not that they do much good). He was crying of pain when he got back in to the room, so I went around getting people in to sort him out. I had to get them to get the on-call anesthetist to come up and refill the syringe which thankfully started to work fairly quickly. It was horrible to leave him when he was in a lot of pain, but there was nothing more I could do.

When I went in this morning, he was ok, but quite out of it due to the drugs. At least he wasn’t in as much pain, and he got through the night without too much trouble. I had a list of concerns to take to the nurses, and the only one that still remains is regarding the physio who will be getting him to move about. He has been in the same position for 5 days now, and that just isn’t on. I asked for a physio, but was told they were only going to see the most “in-need” patients, and apparently, they are those who have trouble breathing. I knew I was fighting a losing battle for the time being, and thought that as Bill was asleep and quite out of it, I’d leave it be. As he has dialysis again tomorrow, I wanted to ensure the physio came in the morning. I was told that they can’t ensure that as they have a skeleton staff due to the holiday. I am so sick of this disregard for patients at this time that I told the nurse that if he wasn’t seen in the morning, I would be going to the Matron, and then on to the PALS (Patient Advice Liaison Service) team. I don’t want to be seen as a constant complainer, but to be honest, I really don’t give a shit - I just want what is best for Bill. I am kind of dreading tomorrow as it’s dialysis day - I did ask the pain management doctor if there was any pain relief he could take whilst on dialysis, but there isn’t. That basically means a minimum of 5 hours with no relief, so I’m hoping that the operation and backside pain (from being in the same position for so long) has eased a little.

I will update this as often as I can, but there are some nights where I only get in, make a sandwich and go to bed.
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