Frederick James Wills

Born 19 March 2006 Died 2 May 2007


Tuesday 1 May 2007

Day 302 (Tue 01 May)Wed, 05/02/2007 - 04:15 — endc011
I stayed last night and Fred remained in considerable discomfort for quite a few hours. He seems to have some abdominal pain by the look of it as he brings one leg up, and is not happy to be picked up. He initially responds well to the morphine bolus that I give him, but over the hours it does not seem effective as previously.

We had discussed with Andrew the changes to the morphine dosages and he agreed to write up a more increased dosage in preparation of it being needed overnight. That way it could be done more rapidly.

As the night went on he become more annoyed and tired and did not respond to the two or three bolus’ of morphine that I gave him. Normally one bolus would work for him and he would sleep.

It felt like neither of us got any sleep until about 0600h where I remember waking up as a nurse scuttled by in the gloom.

He really was quite uncomfortable but slept when he could.

I slept in until 0945h as I was so tired and did not feel there was any need to hurry and get out of bed, especially whilst Fred had decided to nap.

Rachel comes in and he stirs and returns to being quite angry and restless. He gets two or three bolus’ of morphine that does not seem to work.

He does get some more water and milk and we notice that this seems to placate him a bit more than before. This is good news for Fred and us as he obviously is hungry and thirsty and so must feel a bit content afterwards.

Andrew comes in and we have our usual very helpful chat about things and how they are going. There is never any hurry whatsoever in these discussions and we sit on the chairs and discuss things rather than stand about and talk.

They last quite a while, sometimes 30/45 minutes maybe longer although we are discussing difficult topics. They are raised sensitively and we understand that all of these decisions and discussions are about keeping Fred comfortable and happy, and that we can change them if we want to. This makes things initially difficult but you soon come to a clearer understanding about what all this is about. To talk and think about Fred dying soon is absolutely heartbreaking and it all seems so unfair. These last ten months have been a mixture of hopes and fears for us all, with many of them being realised along the way.

We are Fred’s advocates in all of this, and whilst is very difficult to be even contemplating the topics raised, we do not have an alternative. In any case, there is no one else in the world who can make the decisions I don’t think.

During these moments Fred lies fast asleep quietly sucking on his dummy and I hope he does not realise what we are all talking about. We will do the best for him in any case, whatever it takes.

The birds are starting to feed on the feeder we put outside his room. Mainly blue tits at the moment, but I catch a glimpse of others peering at it.

His drugs are regularly reviewed through the 24 hour period and he is now on the following, hopefully to let him rest without any unnecessary suffering. Morphine, Cyclizine, Pantoprazole, Buscopan and Midazolam plus fluids and paracetamol.

He is asleep too, when I leave and give him a big kiss goodbye. His chewing of the dummy is interrupted a bit when I do, and he stirs for a minute or so, and then drifts back off to sleep again.

When I get back home I sort out my clothes for the interview on the 3rd May. I shall do my best to attend but I have to get some things into perspective. We shall see what happens in any case.

Day 301 (Mon 30 Apr)Tue, 05/01/2007 - 04:59 — endc011
Fred was quite unsettled last night, and has developed a temperature too. He bobbed up to about 38.3c for a bit and was given some paracetamol, which brought it down to the mid 37’s.

He drank quite a bit during the night and this soothed him a bit but he is still vulnerable to infection. I referred to his WBC being 0.01 yesterday and this was his white blood cell count. Basically his immune system is compromised through possibly an infection as well as the chemotherapy given in his spinal fluid. Therefore his ability to fight infection is greatly reduced. Previously if he was neutropenic at Bristol we would have kept him in his room until his counts increased. Now we have the dilemma of whether he can enjoy the outside world for a bit, or stay stuck in his bed as he has done for the last ten months.

His marrow has taken a hammering over the last few months and although it is now the donors there, it has not had a chance to repopulate as that takes time. In any case the leukaemic cells are stronger and in more numbers now I suppose, and more resistant to drugs that work against them.

When I get in he is quite and sleepy and Rachel looks worn out. The traffic was heavy today and I could not find a space in the car park. I realise that today is their theatre list and also the day cases arrive so our area is a bit cramped.

Once in his room I get some toast and finish off my Poachers Relish which is rather nice. Makes you very thirsty though.

Rachel’s mum arrives and we have a yap.

Claire arrives mid morning and comes with a gift. She has brought along a bird feeder complete with nuts and seed. We hang this up outside and refill the hospitals one down the other end. I was waiting for someone to emerge and read us the hospitals “bird feeding policy” but none came.

The birds do not leave things lying about anyway.

Shortly afterwards Emma and Kim from work arrive. They are all welcomed by Fred’s snoring and I can catch up with the antics of the office and beyond. Not much changes. Fred remains quite sleepy but does participate a bit.

I get a call from another friend, Rebecca and she is in Exeter on a conference, so she pops in too. I have not seen her for a while and she catches up on all that is happening to Fred.

It was a bust day as Wendy pops in too whilst Rachel and June have some lunch.

We chat to Andrew who assesses his pain management and wants to make sure Fred is getting enough pain relief. We will continue to review this as and when necessary so that Fred is comfortable.

Someone has plundered our milk carton despite having our name on it. It was full yesterday afternoon but today is nearly empty. I guess no one would mind someone borrowing a bit of milk if it was not going to inconvenience anyone, but to take most of it is greedy. I put a sticker on the replacement one asking people not to steal our milk.

Once everyone has departed Rachel and her mum head back to home for the night and I will stay with Fred.

Mike and Susan appear too, as they only live a few minutes away and I have left some stuff at their house. Fred becomes to be unsettled for a bit and is difficult to pacify. I try feeding him and cuddling him but he does squirm a bit. On the bed he is clearly in discomfort.

Susan gets him on her lap and he soon settles and falls asleep for a good time. He looks totally peaceful and has just found a position that he likes. When he is passed to Mike, he shouts again for a bit but soon quietens with Susan.

Just before they go we get a visit from Linda and Mike who live near Rachel’s parents and were in Bristol at the same time as us. It was nice to see them and they see Fred at his grumbliest really.

As we cannot sort his pain Andrew comes back and reviews his infusions of morphine. The PCA machine is re-set and his “allowance” is increased so that it does the job. He gets his new dose and nods off sucking on a dummy. I do not know how long the pain relief will last but the bolus’ can be given every ten minutes now, rather than wait 30 minutes as before. Again this will be reviewed.

He is looking comfortable and his temperature is dropping slowly. They have increased his fluid intake too as it was reduced to make him thirsty. However he might not be feeling quenched so to speak so it is increased a bit to take the edge off the thirstiness.

His cries are not as high pitched as before, so it may well be he has a stomach pain or some other similar discomfort. We do not think it is a sharp pain as that tends to be a high pitched squeak.

Day 300 (Sun 29 Apr)Mon, 04/30/2007 - 04:27 — endc011
Fred enjoyed another good night last night and again Rachel had a good nights sleep.

I met with Wayne and Claire and had some tea with them which was nice.

This morning I drove back to Exeter in the sun and met Amanda and Mark in the car park. My godson James was there too and he is growing up fast and was very alert. It is his birthday soon on the 6th, a couple of days after mine.

Amanda came in with me to see Fred, whilst Mark and James toured the grounds in the nice weather.

Fred had some cuddles with Amanda and thoroughly enjoyed himself. It was nice to catch up with her and kept little man entertained.

At lunchtime Colin, June and Audrey came to visit and so Rachel and I went to the restaurant for a spot of lunch. Today is carvery day and so I had the gammon and Rachel had the beef. It was really nice and just the way it should be. Audrey had eaten earlier with Colin and June, so joined us for a coffee which was nice as I have not seen her for months.

Once back we sat and chatted and we wandered out in to the garden. There is a hen blackbird feeding her chicks in the garden and so it was spotted under the bushes. Once mum arrived with a beakfull of worms it devoured them, revealing its hiding place and went back in amongst the leaves. Colin sat in the hot sun to see if he could see it again, but it decided to hide from then on.

We all enjoyed the visit and Fred got more cuddles and was well behaved as usual.

Once they had left, we sat and read the papers for a bit, and had an unexpected visit from one of Rachel’s fellow wood carvers, Tom, who was in Exeter on business. They caught up with all things wood carving-like and soon it was time for Dawn, Emily and Paul to arrive.

Lots of additional hugs for Fred from the girls and lots of photographs were taken. Emily must be one of Fred’s biggest fans so it was nice he could oblige with some extra special cuddles with her.

Fred has started back on taking water now, but has also started back on his SMA Gold milk, which is good for him. It keeps the mouth clear and will make him feel content too. As he is starting on food again he has a poo that can be detected by the nose for the first time in months. He thinks it is hilarious as we waft around him and get hi9m back into a clean fresh bum.

We chat to one of the doctors who says that Fred is neutropenic again, with a WBC count of 0.01 which comes as a surprise to us. It was 3.9 or so on admission, and I thought the chemotherapy he had intrathecally would not have had such an effect to that extent.

In the past he has had high dose stuff over many weeks and they did not drop like that, so I really now know that we know nothing really about haematology and oncology.

Fred continues to pick his nose avidly which I am very pleased about, as they really do need to be got at. Some of his bogeys are quite awesome.

I head back and will stay tomorrow night.

On the 3rd May at 0930h I shall hopefully get to a job interview with my current employers for a new senior post that has come up. We shall have to see what that all entails. I have had the GPDO (The Town and Country [General Permitted Development] Order 1995, to those not in the know….) sent up to me so that I can revise on a topic I used to patter out daily without thought and literally with my eyes closed, but I may be a bit rusty on now…..

I also check on the statistics for the ‘blog and see that to date there have been 86063 “page views” so far since I started the site.

Day 299 (Sat 28 Apr)Sun, 04/29/2007 - 05:09 — endc011
I posted yesterdays ‘blog this morning, once I had returned to Exeter. Now I realise why Rachel had asked if I wanted to take the laptop home as I went out the door.

Last night I prepared some food for the picnic we planned to have today, and so I poked my nose into Sainsbury’s to get some stuff. They have tinkered with the layout once more and I manage to find the things I need. Yesterday was “Bag for Life” day, so there were not any of the ordinary bags about, only the more substantial ones.

I have a chat with my neighbours Garry and Angela for a bit and then speak with Iris across the way. I wrote a letter to the immediate neighbours explaining about Fred’s problems so most must know by now.

I pick mum and dad up this morning and we head to Exeter. It only takes 35 minutes or so during the day out of rush hour, and it is going to be a hot day. We walk the long, long corridor and find Fred fast asleep. As soon as he hears voices he is wide awake and wondering what is happening out of his view. His eyes end up like saucers in the end.

Once he knows who it is he spends five minutes waking up. Then it is all smiles and jolly waves.

He also decides to drink some water which is good. It enables his mouth to remain moist and free of gunge which tends to settle and solidify. We have to let him have it slowly as he guzzles and ends up spraying water everywhere. He has not been sick for a long while properly and he enjoys the experience.

We speak with the nurse about him having some milk, such as his old favourite SMA Gold. He is no longer being fed by the TPN as that was stopped on transfer to Exeter. He will get fluids to keep him going and not get crispy again, but hi nutrition has stopped. This may explain his recent interest in taking things orally, so we will have to see how he gets on with the milk.

My brother drives up and joins us too for the afternoon.

I prepare the food and we head out into the garden for our picnic. We sit on the bench for a while watch the flies and bees buzzing about us. There is rustling in the undergrowth, which I think is the foraging blackbird that collects worms outside the window.

We set Fred up in his pram by the picnic bench and have some lunch. I have brought a variety of summery stuff such as ham, pork pies, humus, coleslaw, carrot sticks, mini pitas, pickled onions, plus a salad with dressing. It goes down really well, and we wash it down with a carafe of chilled orange squash.

Fred enjoys the sun on the blanket and plays with the flowers we give him. Daisies, dandelions and buttercups all fascinate him and he does not eat them. He does not really put things to his mouth, and these look tasty.

We do not leave any morsels and so head back in to the shade as Fred is overheating. One thing we did not think of is to cover his bag of fluid which he was attached to, as well as the morphine syringe on the driver. A nurse popped out to cover them up with a towel. I guess the fluids would rapidly warm up and we would wonder why Fred had a temperature.

Once back in he nods off and settles, probably a bit hot for him out there. He flakes out and so mum, dad and Dunc head back.

I get a call from Helen Y (or is it “C”?) from Ward 34 to check how we all doing. I tell her about Fred’s antics and it is nice to chat. I am passed to Anna, and she was the nurse who escorted Fred back the other day.

Parking here is a lot easier in that you know you can find a space and is quite reasonable. It is £5.60 for the day here, when I think it is about £11.00 in Bristol. Obviously space is at a premium in a city centre and there is much more room here too generally around the site. We are lucky in that we have been given a Staff Parking Permit for us and also have a spare one which Rachel’s mum and dad have. I reckoned if we stayed in hospital long enough we would start to get staff benefits.

This means we can park out the back in the disabled bays and pop in through the Oncology entrance. Again a nice touch for us. In Bristol we were lucky to have been given a Parent Pass for the one designated car park, and this cost us £1.60 per week which was a bargain.

We do not have a television in the room, other than the Patientline multimedia centres which have been in the press recently. I think they can arrange access for us, though to be honest we have not really watched television recently. It only keeps Fred awake too. I think we can watch programs up until 2100h for free and then you have to pay for it.

It is different from Ward 34 and BMT as the kids here are all in for different reasons, other than those on the Oncology bit. There is not quite the same “community” feel to the ward in that we do not mix in one common area, so it takes time to get to speak to parents. It is good in a way as once we stray on to Fred it can be a conversation stopper

I will also (if I have not already) include some photographs of parts of the hospital. As it is more spread out here there are large sculptures and the like on view. Alongside the main corridor and wards are a number of quadrangles which feature some great stuff, though we have yet to find a way in to them.

Bristol also acknowledges the importance of art in their building programme although this was mainly small scale stuff within the building. However the “lollipops” outside the entrance are very simple and do not signify anything I found out. They must be popular as I have often seen people taking photographs of the things. The building is pretty bland, but it jazzes it up somewhat.

I have also included an image of the hospital site showing the layout. Fred’s Room is also shown on the bottom right hand of the picture and is annotated as such.

Later on Hayley and Graeme from work pop in and see Fred. He is happy to see some more new faces and gets some extra cuddles.

I head back to the Bay and meet up with Wayne and Claire for a Chinese, and a spot of well earned wine.

Day 298 (Fri 26 Apr)Sat, 04/28/2007 - 19:22 — endc011
A good night’s sleep for Fred means a good night sleep for me. We do not have the same style fold down beds here, it is one that is rolled out of the corner and folded down, and then you make the bed. It is however really comfortable and I slept well. I was not aware of the nurses coming in each time to check things, though of course there is much less things to check.

I manage to get Fred’s Homer Simpson radio going and listen to the radio overnight. Wasn’t the World Service but Nicky Campbell seemed to be on for hours, and I am not sure what channel that was.

I was woken by one of the nurses asking if I wanted breakfast to which I accepted and had it in bed, with a mug of tea. I really wanted to lie-in as Fred was doing that, but got up and packed the bed away.

Rachel came in a while later and I had a wash. Fred had woken and felt rather grotty by all accounts and was sick a few times.

The amount of morphine “boosts” or bolus’ he is getting is much less because the background infusion is sitting on the pain which is good. It will be reviewed later today and may be increased.

Kate is his nurse today and we chat to her about various things and she arranges for us to be able to have food from the hospital like an in-patient. This means I can go to the lunch trolley and get something to eat. It is a large wheeled hot plate with various portions on it, so I opt for beef goulash, chips and peas with a hot flap jack and custard pudding. All on a ceramic plate and metal knives and forks too. It was actually really nice and part of the newly revised menu so I will re-visit.

There are plated salads also and sandwiches and some pot which may have been soup. At least it saved me £4.50 or so. I dread to think how much we have spent in cafes, pubs and ready meals over the last ten months. I might try and work it out.

Fred also gets a few more visitors in the form of June, Jean and Sandra We have a good They head off to the restaurant for some lunch whilst I guard Fred.

A bit later Frances comes along, and leaves Samuel and Daisy with her mum out on the front grassed as it is sunny. Fred is still awake and jolly and soon nods off toward the end of the visit. I wander out to see the three of them and they are having a picnic on the grass. The two little ones have grown since I last saw them.

Late afternoon sees Rachel’s friend Lyn come along and she gets a cuddle. I stay a while and then leave the two of them to it with Fred.

Once back I realise that I had forgotten the ‘blog as it was left on the mobile.

Day 298 (Fri 26 Apr)Sat, 04/28/2007 - 06:52 — endc011
Today I drafted the 'blog on the laptop but did not copy it when I left the hospital, so I could not post it from home.
I will do so tomorrrow and but will post some pictures this evening.

Day 297 (Thu 26 Apr)Fri, 04/27/2007 - 03:46 — endc011
Fred had a good and peaceful night last night and so Rachel did too. I headed back to Paignton at about 2000h and was soon back. I did a few things and eventually got some grub from the KFC Drive-Thru at 2130h or so.

I have not had much of this stuff in years, though have one or two occasions visited this outlet since it opened a few years ago. It must be one of the slowest around and is quicker to either walk to the next one, or park up and get it over the counter. I am not sure how the Drive-Thru works internally but it does take time. And they run out of chicken too.

My brother and I once went to Spud-U-Like in Exeter’s South Street to have a baked spud for lunch and the staff had to admit they had run out of potatoes. That was why it was quiet.

We have another chat with Andrew (Fred’s consultant) who has looked at the pain relief and it is to be increased again. We should be able to fine tune the amount he gets so that he does not feel pain and that he will be responsive to us. This seems to be working slowly and so we all agree.

There are lots of topics that need discussing and we are given lots of time to talk about them, and everything is explained well. Generally he will pull up a few chairs and we sit around the bed talking about it.

His drugs are also reviewed and these are getting knocked off slowly. It is all about Fred being able to be off his pumps whilst still being comfortable. They are also concerned that we may not be getting enough cuddles with him and so we debate whether he is pain when jiggled about. Next time he is man handled we shall see if he needs any additional pain relief.

He is quite happy to be handled and gets some nice cuddles with Rach and is very alert and responsive. He holds his head well now, and it does not wobble about like before.

Claire visits us too for a couple of hours and this was nice. She took some photos and hopefully he entertained her well. On the way out we popped in to the charity shop in reception and had a good look around.

She went off on her way and I plodded back to the room. I have been able to pick up and wireless broadband signal at 100% strength, and it is known as “Hospital Public” and should be accessible. Unfortunately I cannot get on to it at the moment, and IT Services have said there is not wireless broadband in the hospital…… I shall continue to investigate.

We have a peaceful day and Fred seems more content now. He is much better in the afternoons really, as the pressure on his head probably reduces gradually as he moves around. There is also a tendency for the fluid to settle in one position, and so when he wakes he will not only feel uncomfortable but will probably feel sick.

When he left BMT he was on 21 drugs I think and these have now been reduced to five. These are mainly for dealing with his head problems, stomach pains and anti-sickness and also include his morphine. It means less tinkering with Fred and more available time for us to have a cuddle with him and hopefully get him out and about.

Later in the day Fred gets more visitors, this time Hayley and Kim come along in the evening. They visited Fred several weeks before his BMT and he managed to keep his beady eye on them whilst they were here. He was getting a bit sleepy by the end and so drifted off but kept and eye open just to see what was happening. I managed to catch up on the gossip in the office.

After they left I went to the restaurant to get something to eat. They stay open until 2030h and so I had breaded plaice, chips and peas which was really nice. It was a nice change to know Fred was zonked out comfortable and I could have 15 minutes having some grub before I trot back to see what he is up to. The kitchens look pretty big from the glimpse that I saw through the door and it looks like they make most of the stuff here. It is reasonable priced but the quality is good. They do a carvery three times a week and Rachel saw the plates yesterday and it all appear to have that “home made” appearance.

I get back and he is still fast asleep snoring quite loudly.

Day 296 (Wed 25 Apr)Thu, 04/26/2007 - 04:48 — endc011
We had a few more chats today regarding Fred and how we manage things here. Lots of difficult topics and things to think about that are gradually being introduced to us which I suppose is the way to do things.

On arriving at the ward I see one of the doctors from PICU who was at Bristol when he was admitted. She was one of the four that were part of their Retrieval Team who came to collect him.

I later was walking for breakfast in the canteen and another one of the doctors from Bristol came up alongside me, and we had a chat about Fred. She comes to Exeter every twelve weeks to run a clinic and I think she had something to do with the Renal Team who had an input on Fred in the early days.

Having my breakfast on level 2 I spy my colleague Roger getting a cup of coffee from the till, and he is here for an appointment. Strange to see all these people on one building.

We get some visitors today as Colin and June come to see Fred. He awakes for them and is pleased to see them but is increasingly sleepy now. He looked content. Gwen from Chagford pops in too as she has an appointment herself at the hospital today.

My brother also passes by for a quick chat and Fred gets a bit more animated. He has a brief episode of hiccoughs, and finds my brothers impersonations of him hilarious.

They are extensively reviewing his drugs so that he is disturbed only occasionally and we understand this. Again we are consulted about what we want, as we obviously know him best and this is nice.

I head home again tonight to sort a couple of things, and hope he will have a peaceful night.

We are staying at the Royal Devon and Exeter Hospital, Exeter, on the Bramble Ward. The ward is divided into teams and Fred is part of the Green Team. If anyone wanted to visit contact us first but it is accessed via the main entrance on Level One and is in the “H” area. Those that have already asked to visit, I will try and respond as soon as possible once we find our feet.

Day 295 (Tue 25 Apr)Wed, 04/25/2007 - 07:35 — endc011
Today was always a bag of mixed emotions and one which we were both very apprehensive about.

Fred went to theatre at about 1100h and we took him down there for the final time. He was very alert on the way down and even he looked a bit worried. He emerged a little while later fast asleep and so seemed content.

We chatted to a few staff and parents in the few hours afterwards and soon the time approached 1500h. A few more came in to say the goodbyes, and I think we are getting used to it now. Or least I can keep the blubbing at bay a bit more easily.

At about 1545h I heard the entry phone bell go and guessed it was the ambulance crew arriving for some reason, and a few seconds later found out indeed it was. There were a few gathered outside the room, not necessarily to see us off but because the trolley was blocking the way.

This was very reminiscent of how it all started ten months ago – the ambulance crew coming to take him away. It did not take long to get used to the idea and soon he was on the trolley wrapped in a knitted blanket and strapped in securely. A few more difficult farewells and we headed out of Level 5 for the very last time as a family. Down in the lift through the main entrance to the waiting ambulance.

Anna is escorting Fred today and Rachel is a passenger too, to keep Fred under control. I give him a couple of kisses as he peers around the ambulance looking a bit startled by it all. Back doors close and they head out of the hospital to join the traffic. The wrong direction mind, but that was corrected later.

I had his pram loaded with the remainder of our gear and left it in the reception office whilst I went up to the house to collect the car and our bags. I said more goodbyes there and it was starting to get difficult and I really wanted to escape by then.

However, not so easy but soon was passing over the Clifton suspension bridge, and joined a queue of traffic onto the M5.

It takes a while to get there and I am anxious as to what we will find after being used to Bristol for so long. I put my money in the machine and eventually find my way to Bramble Ward, and see Fred is in Room E with the Green Team. He is in his cot and fast asleep as usual.

We meet his nurse for today Claire, who seems really nice. A couple of cups of tea later and we meet his consultant Dr McNinch. He seems like a very nice chap and after a few minutes we both warm to him. He explained what was what, and tentatively went through all of the inevitable stuff about outcomes and what they can do., He made it very clear that we were part of the decision making process and we all agreed that it was all about making Fred comfortable and as happy as he can be for the time he has left with us.

This was a really useful discussion and helped us a lot. There are lots of things to talk about over the next few days, but we really feel he is still in safe hands.

I also feel it was the right decision to head home when we did, as psychologically Fred is “home” in Devon. We have our own room near the nurse’s station and there is not any city noise. There is not any constant wailing of sirens of ambulances coming in and out of the hospital, and outside it is totally quiet. With the window open, we can hear the birds singing and it’s a very relaxed atmosphere for us all.

Bristol was for me all about treatment and a cure and all the hope that goes with it, and Exeter I think is about realising and understanding what will happen, and helping Fred find peace and comfort as best we can, and so to change now feels right.

The staff we have met are all friendly and have local accents too. They know the area like us, and just makes it a lot easier for us all, including our families and friends too I hope.

The hospital is older but has a friendly feel to it and is familiar too. Having been there a few times to see relatives also makes it like coming back home in a weird way.

There is a canteen that stays open until 2000h and a well-stocked shop that is open until 2100h. As Bristol there is a Parents Room with inclusive tea, coffee, milk and bread for breakfasts, which can be brought in for you in the mornings.

The room is a funny shape and we will be moved to the adjacent one tomorrow, which makes it easier for the parents bed to be positioned. It will have an en suite shower too, and has a door directly into the little garden at the rear.

We head down to the shop to get some food and a drink and chat with the Sister who is looking after Fred and Rachel tonight. She seemed lovely too, and so I leave Rachel and Fred so that I can take the remainder of our stuff home. I have a lot of Fred’s things, which need storing safely and do not want them nicked from the car in the car park

Tomorrow we will get a pass for the free parking and will meet the rest of the team.

We shall miss our friends on Ward 34, but are glad they saw Fred go off as we would have wanted them to remember him like. He was alert and looked, well, very….Fred-like.

Just before I left, he perked up and did a few smiles and gurgles, which I managed to photograph, but they did not quite capture his cheeky chuckle.

I will head back tomorrow and hopefully Rachel will take some time to head home over night.

I am not sure what will happen with regard to internet access. We will have to wait for the electrician to check the laptop and other stuff. I hope he will arrive promptly and we are still awaiting for the Bristol electrician to inspect our stuff some ten months and six requests later….

I have located some of my “stinky noodles” as Emma refers to them as, as I can snack happily on them. Fred is not partial to much orally now, but he can watch and wince as the chilli takes hold.

Day 294 (Mon 23 Apr)Tue, 04/24/2007 - 04:16 — endc011
The morphine PCA enables Fred to be able to get some sleep and remain settled. It is only pressed when required and is used on average every two hours or so . At the moment it can be pressed up to every thirty minutes and deliver a 1ml slug of morphine which seems to work.

Overnight he is quite happy, stirring a bit noisily at 0500h. He is still a bit sick now and then, but this seems to have subsided with the anti-sickness drugs.

Rachel, one of his nurses in for the “twilight shift” up until around 0000h, and I say ‘bye’ to her in the early hours. It is heavy going for us all in different ways. I did not manage to see Charlotte before she left as I had fallen asleep again after Fred’s early morning call at 0500h. She was another Fred fan. In fact there are a few I did not say goodbye to and I hope to be able to do that somehow, perhaps one day.

In the morning the anaesthetist comes in on his “Pain Team” rounds. He assesses Fred and decides that having a background infusion of morphine will keep Fred’s pain within the “therapeutic window” and so adjusts the pumps accordingly.

The yesterday I managed to dust off all the remaining dry sand from the plaster imprint of Fred’s foot, and it has come out really well. As the plaster was poured onto the sand, the texture has transferred to the cast, which is much better than the smooth finish I thought would appear. We will get it fixed to a back board and framed so it does not break.

Seeing the print emerge as we dust it off reminded me of some a poem/prayer I saw, probably about 12 or 13 years ago at party in Brixham. It was in a frame, hung on the stairs and I had not come across it before, but it stuck in my mind. It’s titled “Footprints in the Sand.” Since then I have seen it a lot and is a popular and well known verse. It may well be a bit “old hat” to some of you, but in the circumstances I have located those words again, and they are below:

One night a man had a dream. He dreamed he was walking along the beach with the Lord. Across the sky flashed scenes from his life. For each scene he noticed two sets of footprints in the sand: one belonging to him, and the other to the Lord.
When the last scene of his life flashed before him, he looked back at the footprints in the sand. He noticed that many times along the path of his life there was only one set of footprints.
He also noticed that it happened at the very lowest and saddest times in his life. This really bothered him and he questioned the Lord about it.
"Lord, you said that once I decided to follow you, you'd walk with me all the way. But I have noticed that during the most troublesome times in my life, there is only one set of footprints. I don't understand why when I needed you most you would leave me."

The Lord replied "My son, my precious child, I love you and I would never leave you. During your times of trial and suffering, when you see only one set of footprints, it was then that I carried you." By Mary Stevenson 1939

Rachel packed a lot our stuff last night to head back home. We have separated our bags and stuff into the things we will carry to the R D and E, and stuff to head home. Many of Fred’s toys and clothes that we will not need now are ready to head south. My brother comes by this afternoon to see Fred and we have a bit of fun with the three of us. We receive a couple of christening cards too which was nice. Duncan takes the rest of Fred’s stuff with him which we will deal with later.

We say goodbye to a couple of other staff, Mary from Hotel Services. We normal see her on the stairs keeping the seven levels spic and span, and have a little chat. Whilst many of the staff have come into the room to clean the place down they have always stopped to see Fred, who has over the months rewarded them with a grin and a chuckle. Many of the staff we did not know at first had heard of him, and when in the corridors moving him in his pram they would greet him. Again he would entertain them with his flirtatious behaviour. That is his trademark and he loves it. Tina from Hotel Services also pops by to say her goodbyes, though we may see her tomorrow.

I get back with an array of bags enclosing the last remaining bits of the room in the hospital. The foot and hand print canvases, the plaster imprint plus all sorts of paperwork relating to him are safely stowed, double wrapped as best we can.

His theatre slot was dropped today, as was everyone’s for some reason. This means a delay for us tomorrow, which we are not best pleased at. We are assured that he will be transferred at 1500h tomorrow by ambulance without fail. However I suspect if there is a problem in theatre we will be delayed once again. We have stressed that we want to go tomorrow whatever.

Just before I go we are chatting with Jamie, who was one of the nurses, and Michelle came in to say her farewells too.

I have returned to the house now to sort our final belongings and these are now packed and lined up by the bedroom door.

Tomorrow will be the strangest and possibly the most difficult part of these last ten months so far, bringing our one year old son home by another ambulance, where hopefully he will find peace.