Day 283 (Thu 12 Apr)(Day Plus 58)Fri, 04/13/2007 - 04:22 — endc011
Today I had a bit of lie in which was nice.

I wandered into town to get some stuff, and later went to get a new battery for my car, as it has given up doing what it does best. My car has been off the road since September to save a bit of money but I need to get it back on the road really.

I toured the battery shops with my dad and managed to rustle one up for a reasonable sum.

I spoke to Rachel a few times today. The weather is good in Bristol and they managed to take Fred to the park, which I went to the other day. He was wide-awake and thoroughly enjoyed the fresh air as always.

He was waving at people in the end and when they returned he had a nap.

This was followed by a session on the floor and he enjoyed that too. He had a few more different toys from the play department put before him and he managed how best to tackle those and knock them down. One of the gifts he had from the ward on his birthday was a truck which makes a lot of noise and he managed to keep the din going by repeatedly banging the head of the driver of the lorry. Rachel sent me a photo of him chewing his toes too.

He went for an MRI scan today on his head, over at the BRI and results will not be known for I do not know how long. We are anxious to know the results as we never got the results of the first one he had in early August. Earlier ‘blogs referred to us chasing the results, and it got a bit embarrassing in the end asking for them. Events were overtaken when the second MRI revealed no problems so we did not pursue that. Hopefully these tests will reveal everything is OK.

Rachel signed the consent forms for a BMA and LP tomorrow. We also hope they will take a look at the problem tooth too at this time as we do not want him to have another GA later without real need. He has had a lot of GA’s in the time he has been at the hospital and they are not the sort of things you want too often.

Last time he had a GA he encountered some serious respiratory problems which took a few weeks to resolve, and was on oxygen for several days.

I sent off some donations today to CLIC Sargent following the Torbay Council football match. There was also some from others attached to that. I looked back at the money that friends, family and colleagues have raised, plus a few strangers. To date we have raised a total of £4363.00 for CLIC Sargent, Ward 34 and the BMT Ward. These monies will go where it is needed rather than the corporate pot and certainly helps those that follow behind us. Thank you to all who have contributed, either financially or by taking part in helping to raise that amount. I am certainly happier now giving money to charities where I am confident that it will be used to the best advantage.

Also, the people who spend the money are genuinely grateful at all they receive as they only have limited budgets for many things and it enable them to buy more of certain items, or things of a better specification. Once I get all my receipts in order I shall post them on the ‘blog. Some however were merely passed on by us (the donations from the news agency and one of the daily newspapers) so I will chase for some form of a receipt.

Day 282 (Wed 11 Apr)(Day Plus 57)Thu, 04/12/2007 - 18:45 — endc011
Fred had another torturous night in parts, where the pain relief did not seem to have effect. It was intense at times, but subsided irregularly and he kipped as did I, when we could.

When the next shift came on I needed some direction as to what was next in pain relief as Oramorph only seemed to work at short periods of time.

He slept well early morning, and I gathered my stuff together.

Rachel and June arrived and we swapped seats for me to head back.

I went off in search of the medicine dispensing soother in Taunton and met up with Frances for a bit in the town at lunchtime. No luck there, so headed back down the M5 intending to look in Torquay or Paignton.

On the way I get a call from Rachel to say that some blood results have come back, after being taken before the bank holiday break. These are peripheral bloods, taken from Fred, and have showed a “rogue” cell in the laboratory. This is not what we wanted to hear, but its identity is not known at the moment, or that is what we are told.

The words “rogue cell” are very worrying indeed and mean that we have to wait until Fridays BMA to have a clue what it may be. Neither of us know what it means, so we will have to worry until then. I wonder whether I should turn around and come back, but there is not much I can do until we know the results of the BMA. Again an appeal for thinking about Fred please?

Heading back into the Bay I see a large black cloud coming from the beach and go and poke my nose in. It is a rubber dinghy on the beach that has caught alight somehow, and was just being put out by the fire service when I arrived. There was nothing at all left of it on the beach other than a few smouldering bits.

I searched Torquay and Paignton for the medicine dummy and eventually locate the one I wanted in a chemists in Paignton. It was the one advertised on line at Mothercare and was £1.50 cheaper too. I should have bought the lot and sold them on Ebay. This is one of the oldest chemists in Paignton so goes to show how useful these little places are, compared with the high street retailers. When I was a kid we used to make fireworks and bangers and bombs to set off down the beach. We used to visit the chemists to buy our stock, which meant one had to go in and ask for potassium nitrate, or sulphur. These two combinations would prompt the staff to ask the elderly pharmacist to peer around the screen at us, looking over his half moon glasses.

The staff would come back and ask what we wanted it for, and we would refer to a school experiment. Most times we are given the stuff and off we went to get some copper pipes. If the pharmacist suggested we come back in half an hour we never did as we always thought the police might have been lying in wait. No damage or injury was ever caused to anyone or anything.

I met up with Wayne in the evening and headed to the Embassy Tavern for a starter of whitebait, followed by a fat steak, which was very good as usual.

Then onto the Wetherspoons in Paignton for a drink. Whilst in there a couple of drunks were starting to cause problems, though were tolerated for a bit. After being declined drinks for the second or third time they became abusive, and the police arrived to shuffle them out. All was going well until outside the pub they decided to resist being moved on, and a large bang against the window signified at least one detained.

A peer out of the window confirmed the second person detained also with his late night Lidl’s bargains strewn across the pavement and road. Both were face down on the pavement and resulted in most of the pub up against the window seeing what was going on, and chuckling at the drunks plight.

They disappeared to the hallowed, but BO-smelling portals, of Torquay Custody and we all carried on regardless.

I had a text from Rachel to say Fred had been out in his pram today again, up to Clifton Village, and enjoyed very minute of it. He has, since when I last saw him, pulled his NG out by himself and is getting meds by syringe through his dummy.

He is also starting to take a few mls of milk by the spoon. This washes his mouth out a bit and encourages him to take some mouthwash too.

Day 281 (Tue 10 Apr)(Day Plus 56)Wed, 04/11/2007 - 03:11 — endc011
Last night I said I would get some fish and chips from up the road, as they to date have been really good. Generally cooked to order it is in great batter, ‘though I am a fan of “old” chips really rather than freshly fried ones. The only few words I have ever spoken to the man is obviously “cod and chips please,” and in answer to his inevitable question as to salt and vinegar, “lots on both please.”

I normally waved at him regularly when we were up at CLIC House as we had to pass his place each time. Also I now use that route to take a short cut through to Somerfields so, again, usually give a nod or wave if he is looking up from his fryer. Yesterday he finally spoke to me and said that it must be time for us to go back soon. I replied that it was…. but how did he know we did not live or work around here? He tapped his nose and said that he knew we were staying at the hospital and remembered we came in the middle of last summer. This intrigued me, as we only just pass by his shop window. He went on to say that I looked like the “rest of them” that come from the hospital. We had a chat and he obviously gets to know who works at the hospital and those that are staying there. Very observant I thought and I did not know that we smelt of D1 disinfectant. Must also be the look we have and the clutching of bags of washing which is spilling out.

Poor old Fred. His problem with severe pains continue and last night they seemed to have increased somewhat. He gets his regular pain relief but this does not seem to cover it really. He can fall asleep but is woken more frequently with a start and takes longer for the pain to subside.

Before midnight he was seen by one of the doctors who thought it would be a good idea to put his NG back in, so as to have it on free drainage and anything collecting in his stomach can come out up the tube, into the bile bag. This means that the NG tube acts like a chimney and any stuff in his stomach finds its way out up the tube into the bile bag. It means it does not build up in his stomach and cause him irritation.

Before he can have the tube passed down though he needs some platelets and they go in just before midnight. These will help his blood clot if the tube scratches anything on the way down and he was due some anyway. He gets some pain relief just before this and is soon settled by 0100h when they come in to do the NG tube. I am never a fan of this, but Alice and Emma do the deed whilst I have a quick coffee elsewhere.

When I get back he has a bloody nose which is inevitable really and looks a bit battered. A quick wipe over and some morphine down the tube sees him settle for the night.

In the morning he is quite chirpy and a bit crusty on the face where he has been wiping his nose. He has been fidgeting with the new tube and manages to whip it out whilst I am not looking. I have some meds lined up for him and he is due some Oramorph again too.

This means another needs to go down this morning which hopefully will teach Fred not to tinker with things that do not concern him. Charlie pops it down as I hold his arms. If the tube goes down quickly I am OK, which it does. Once it is past the back of his throat he is generally compliant.

Usually first thing in the morning is the best time to get the suction going, and it is actually quite therapeutic really. Maybe not for him directly, but for me it is quite satisfying getting the tube carefully located on a dangly bit of dried phlegm, and sucking it out without touching the sides of his mouth. As he is usually resisting by thrashing his head about you need at least two of you really.

The tube is 25cms long and about 5mm in diameter and is rigid looking a bit like one of those old water dispensers that you have in a mouse or hamster cage, but is bigger. It is unpleasantly known as a “Yankauer” sucker and it is connected to the suction valve. Interestingly (or not) it gets its name from its creator - Sidney Yankauer - an American surgeon who died in 1932 aged 60.

Turn up the pressure to about 15 kPa (which is just over 2 psi) and wave the tube about in his mouth. Once you have hovered up a rubbery end, you can coax it gently until it rushes off up the tube to a tub on the wall. Very satisfying for all.

He will be back on his 18 hour bags of TPN again today I learn which is good. Sometime this week he will go to theatre and have his BMA and a scope poked down to have a look at what is going on in his stomach. That will be under GA, so hopefully we will not have a repeat of the last time Fred went to theatre, and came back worse than he did before he went in. Again, as I have said we will have to await the results of the BMA to see what is happening. Fingers crossed.

Once his pain is relieved he catches up on his lost sleep which is good for him.

Once he is disconnected from the pumps he is dressed in his tank top and trousers plus his new training shoes. He is planted in his pram, and after a few problems we head out into the bright sunshine. He blinks a lot a first but is soon wide eyed again by the traffic and I turn up the hill toward the university.

The flag stones on the pavement joggle him a bit, and we have a few retching points but all OK. Once in the gardens Fred takes in the blackbird songs just like on his musical light. With the sun on him he starts to nod off gradually keeping half an eye open on what I am doing with the camera. Next we head down the steep grass bank to the small ponds where there are some tadpoles by the look of it, as some of the kids are tormenting them with sticks.

A few photos are taken of him, though I missed the one of the passing bee and Fred spying each other. The insect was a bit wobbly and I had to shoo it on its way as a bee sting for Fred would probably end in disaster.

Once back Fred fell asleep immediately without any grumbling, just slept where I put him.

I weigh him again today and he is 9.8kg which is up a bit really though they have taken him off his Frusemide, the diuretic.

Rachel and June will be back tomorrow and I will head back all being well.

Day 280 (Mon 09 Apr)(Day Plus 55)Tue, 04/10/2007 - 01:52 — endc011
Yesterday, we had been here for nine months in total.

Fred is a rather unsettled today but sleeps well in between his bouts of grumpiness. The results for his ear swab have not come back yet, but this is probably die to the labs closing down for the weekend.

He is still getting these bouts of severe stomach pains, resulting in him crashing about the cot with some force. He is getting various painkillers regularly but these do not seem to deal with the sudden sharp pains. He is prescribed some oral morphine which hopefully will let him have a deeper nap and sit on the pain if possible.

He has not eaten anything for a while now as his TPN equates to 100% of his requirements but this still must make the stomach feel empty and therefore him feel hungry.

He gets a blood transfusion in the afternoon, and will get a platelet transfusion soon after.

I wander into town to get some stuff and go in search of a “medicine dispensing pacifier” which is basically a dummy with a reservoir, and a screw cap. It allows you to put liquid oral medicines in and the baby chomps on it, taking the drug. As Fred does not have his NG at the moment we squirt a bit into his mouth or put it on the dummy which is quite time consuming. I went into Boots and Superdrug but they did not have any. I later track one down to Mothercare for £3.99 and ask Rachel to pick one up from Taunton on the way through on Wednesday when she returns.

I also needed to pop into a couple of ‘phone shops, as I need to change my 'phone. I went into that beastly high street store - Carphone Warehouse - to pick there brains and have their brochures, where I was collared by a very polite sales operative. I asked her if she could give me the date my contract was to expire with them. She looked at the records on the computer screen (it does not tell her I am a disgruntled customer looking to defect as soon as I am able) and gushed “you are due for an upgrade on your phone!!” I ask when this can happen and she proclaims “now!” She seemed more excited than I did at the time, tapping enthusiastically to see what other rewards can tempt me, although she could not find out the answer to my original question - but I knew the rough date anyway but just wanted to check.

I was more than a little bit interested to see what she would offer me and she explained the overly complex procedure for new tariffs nowadays i.e. jump and down three times in Month 5, wave your hands about excitedly and they will send you a chequeback offer of £50.00 etc etc provided you do it on the exact day/hour it is due for redemption otherwise you lose out. If you use 500 minutes to a number with the digit 1 in it they also give you a bundle of 2000 text messages solely for use to Darkest Peru though…….. and so it went on.

I was contemplating her offer, comparing it to a very similar (but much better one up the road) when the spikey haired Manager came rushing over looking very very upset and concerned indeed. I assume his hair was styled like that by him purposely; otherwise it may have been due to static build-up from his glossy nylon suit. Having apparently ‘overheard’ our conversation he sighed wearily shaking his head, “Chloe, that offer ends this afternoon - didn’t anyone tell you?” She looks as shocked as him now, covering her mouth and whines “Oh no. Right” and looked at me ruefully as if to say “silly me!”

She carried on writing the details of the offer (that ends today) on the brochure I am waiting to make off with, as she knows I am only browsing and am looking at changing in the next few weeks and not immediately. Chewing her pen pensively, and on arriving at her cunning plan, she purrs “is there any reason why you cannot sign up today?” I have seen these retail-monkeys in action before and had great delight in responding that I couldn’t possibly now, because her manager/colleague had just insulted my intelligence with the oldest and naffest sales ploy in the book, and I wasn’t having any of it thanks. I explained there was a similar and better offer in the Orange shop up the road that did not have a time limit on it in any case, and I trooped off with brochure firmly in my paw.

Since the company bungled my broadband application last year and left me out of pocket (and bitter) I occasionally pop into these stores and spend time with the staff, just chatting about new tariffs and contracts, as I have no intention of doing business with them again. As the staff members seem to change every week I am greeted with open arms - like a dear old friend - as they do not recognise me. Some of my friends say I am becoming a GOM. This is Grumpy Old Man I think and quite right too.

Fred is on his 48 hour bag of TPN so is unable to promenade with me today. As he is sleeping I do pop out a couple of times which is good just locally to see what is happening. I see the forecast is looking good until Friday and I hope we will be able to go out for some air.

I have some tagliatelli in the ‘fridge here, plus some garlic bread which I should have really. However in the corridor earlier I smelt fish and chips wafting about so I may well sneak up to the Kingsdown Fish Bar for a mighty portion of cod and chips. If you are unlucky, he will heap the largest pile of great chips on, which you end up having to eat anyway. If you are really unlucky, near closing time, he will give you extra bits of fish too. At the end I usually feel too full and queasy.

Day 279 (Sun 08 Apr)(Day Plus 54)Mon, 04/09/2007 - 04:43 — endc011
The Easter Bunny came during the early hours and neither of us heard as we were fast asleep. We both did quite well in respect of sleep and Fred seemed quite happy on waking. He is more entertainable now and enjoys silly things, all which make him laugh. Monkey noises, the Benny Hill theme and biting both his feet all make him laugh.

His ear problem persists in that there is a bit of clear discharge coming out so it is later checked by the doctors. It might be some of his tears but I doubt it.

When Rachel comes down she brings a few more eggs that have been given by CLIC. He has a few here, with a few more in Chagford where Fred has one a few draw prizes in the form of eggs.

We are destined to stay the day inside and peer out of the window. It is quite quiet outside and looks good to wander around in. His TPN is due to finish a long way off.

After some thought elsewhere, the TPN is disconnected and we are told we may be able to escape the place for a couple of hours which is really good. Great thinking girls!

Fred is limbering up when his ears get inspected and it looks like he might have something going on in there. They will take a swab of the stuff to see what it is but it is bunged up with wax. And lots of it.

Fred senses something is up and gets all rather boisterous, as do we. After a few minutes we are off down the corridor with Fred’s hat at a jaunty angle, out into the sunshine.

We wander up to Castle Park and sit on the grass for a bit by the daffodils. Nearby is a Peter Randall Page water sculpture which we first saw in October last year. He was fast asleep by the time he was passing it.

We moved on to the circus on the green, “Sequins and Sawdust” and listened to the band playing inside, and to the occasional cheer from the crowd. A stroll along Wine Street/Corn Street and down back to the hospital and Fred remained fast asleep but happy in his cart. He would wake occasionally and crane his head about to see who was about and then drift off again.

Once back on W34 he gets some potassium as he low and is then hooked up again to the pumps for many hours. He certainly enjoys the change and the fresh air and a bit of sunlight on him must help his vitamin D or something.

I see another CLIC House veteran return today and they used to share the annexe with us from July to October time, and we had a quick chat. It was good to see them too.

I left Fred a bit “noisy baby” as he was obviously wanting to go out again but another 48 hour bag of TPN was being dragged into the ward I suspect at that time. It would be nice for him and I to go out tomorrow if the weather is going to break soon, but at least we had today.

Day 278 (Fri 07 Apr)(Day Plus 53)Sun, 04/08/2007 - 03:23 — endc011
When I get back down Fred is fast asleep and hopefully dressed to go out later on.

The sun is shining this morning too and I walk under the arch to take a look at the university gardens next the house.

After breakfast we wonder what time we can head out with Fred. Unfortunately some clown has arranged for Fred to have a 48 hour bag of TPN connected up which means he cannot come off until sometime on Monday. He normally gets a 18 hour bag, and for the first time in four or five months that little Fred can come out with us, his chances are scuppered and we have to stay in here. To make matters worse his NG tube came out last night, and it has not been replaced which is good. He now looks like a normal little boy as for more than ¾ of his life he has the tube coming out of his nose, untidily stuck with tape to his cheek. Again we are unable to take him out “tubeless” now and it would have been the first time that people would not have stared at him.

No one was sure why the 48 hour bag appeared, but I guess it is because of the weekend. Anyhow, it has managed to spoil what we thought might be a weekend for Fred to stopped being bored and see the outside world. His frustration and anger must be related in some way to being stuck in bed for so long. He really really enjoyed his little jaunt yesterday, as did we. Perhaps if the “decision makers” spent nine months in hospital they would think at how much opportunities like going out can help us maintain sanity.

We leave Fred asleep in his cot and wander into town to see what is going on down there. It is fairly crowded and we browse for some clothes for him.

He is asleep when we get back, sleeping at a crooked angle again. He really does insist of lying all twisted up, with his arms jammed up behind him. He then wakes and cries out loud when the arms have gone to sleep and they do not work.

Not much else happens in our day and I am off to get my tea in a moment. Its spaghetti Bolognese and a pile of garlic bread for me.

I have to keep putting a bit of his oral meds on his dummy and squish a bit into this mouth as by 2030h he is still NG tubeless which is great for him and us.

Day 277 (Fri 06 Apr)(Day Plus 52)Sat, 04/07/2007 - 07:31 — endc011
I had a bath this morning and decided that I would head back to Bristol as I was missing Rachel and Fred, and had done the bits I wanted to do. As it is a Bank Holiday weekend we might as well try and be a normal family.

I was going to turn up unannounced but chose not to in the end. I visited mum and dad before leaving and headed back along the M5. There had been an accident at J22 on the southbound carriageway earlier in the day, and although it had been cleared for some time, when I passed it was slow moving traffic from J22 back to J19 and beyond.

As I arrived in the hospital I was told that Fred could go out for an hour which was good. It was a complete surprise to us, and I was glad I decided to come back after all.

So at about 1600h Fred was installed into his pram and we headed up the road toward the Triangle and beyond, onto Whiteladies Road. It was a lovely warm day and Fred was wearing his farmer’s style hat and also a new pair of training shoes that Emily got him. It was nice to see him in normal clothes and he appeared to be very interested in what was going on around him.

Things that were close by would make him take a look and he was also very focussed on us too.

Once back he was a bit grumpy which made us think that to lye in a bed may make you bored.

Otherwise it was a lovely day and hopefully we will be able to take him up to the gardens tomorrow if that is possible.

I left Rachel in the hospital and I will be there tomorrow night.

Tonight I ended up chatting for hours with a couple of the parents and so hence the late ‘blog.

Day 276 (Thu 05 Apr)(Day Plus 51)Fri, 04/06/2007 - 03:34 — endc011
I rang Rachel and found that now he has a bit more pain relief he had a more settled night, which was good news. Little grumbles but no real crashing about.

I had a nice soak in the bath this morning and sat down to fill in my job application forms. It needs to be in by tomorrow, although I thought it was the 16th of this month and not the 6th. Hence me coming down to retrieve some of the information I need.

All filled out I went over to my mum and dads for some lunch then went to Exeter with my dad to drop off the forms. It was a nice day and a nice drive. I could see the traffic is getting busier for the bank holiday weekend, and hope I shall miss the bulk of it tomorrow.

Fred has been more settled again today and Rachel and Alice managed to, in a joint effort, extract a lot of gunge from his mouth. It is still the remnants of his mucusitis, and solidifies in his mouth. In the early hours of the 4th I extracted a kidney bean sized piece of gunk from his mouth, which was sent off for analysis. It has pink bits in it again; the last time it went off to Microscopy and they confirmed it was indeed a lump of “tissue” and was a bit of mouth lining coming adrift. It does not mean he has got a bit of mouth lining missing as afterwards if you look his mouth is clear and pink. I suppose it the old bits of mouth coming adrift but can be a choking hazard, so “better out than in.”

The results of the x-ray and echo come back OK and so we just await the BMA and endoscope lark next week. There is a possibility he will join the weekend list for this, if a slot becomes available. The results of the BMA are something we dread as you know. It is horrible to have to wait, as it will confirm whether the transplant is working or whether the leukaemia has come back. I am not sure what, if any, treatment is available if it is not good news. Hopefully we will have good news so an appeal once again for all fingers crossed and prayers please.

The Chimerism tests came back OK the other day too if I did not mention it other ‘blogs.
We also see Helen D yesterday and have a chat with her. Rebekah seems to be doing well which was good to hear and hopefully things will continue to progress. Next time Helen comments on the 'blog hopefully she will give a little round-up of recent events?

I am back tonight catching up on the ‘blog and will make some burgers I think. I have a surplus of beef mince and cheese, plus some veg in the ‘fridge.

I have had another look at the statistics for the ‘blog which grow gradually. To date there have been 69,178 page views since I started, which equates to an average of 247 views each day. I do not think that is me looking 247 times a day. I hope. There may have been a few generated from my letter which was published in The Times on Friday. I was responding to a letter about ‘blogs where the author reckoned ‘blogs were boring things about nothing in particular. I agreed that many are vague ramblings about topics no one was interested in, but referred to our ‘blog and how helpful it was to us. It enables me to record all the silly things, and more serious happening to Fred and allows friends and relatives to keep abreast of his progress without resorting to contacting us.

We are happy for people to contact us about Fred, but some people do not want to bother us, so it is a happy medium really.

I have taken all of the ‘blogs to date and put them back into a Word document, so that I can edit it a bit more. I am currently going through and correcting the errors, and tidying up the text so it is more readable. As I try and type quickly (because often I do not really have time to do this on one go) some of the tenses get muddled, but I would like a better record.

I have also added another photograph of Fred called “Eyebrows Ahoy” as you should be able to detect the first sproutings of eyebrows and some eyelashes which are coming back after they dropped out for a fourth or fifth time. They have previously come back black, mousey brown and a hint of “ginger”, and now appear to be a black-as-coal smudge. They look a bit large to me at the moment. He is also getting a slight velvety down on his head. With a bit of prickle though.

Day 275 (Wed 04 Apr)(Day Plus 50)Fri, 04/06/2007 - 02:59 — endc011
He continues to grumble during the night with these bouts of severe stomach pains which last about 5 minutes, and then he will fall asleep again. I try and restrain him during the event but find I have to let him free, as I am afraid his resistance will break an arm or dislocate a leg.

Trying to change a sloppy nappy at 0300h in the morning is normally easy in that he will remain on his back, and it only takes a few seconds. If we are lucky he will sleep through the whole thing. Once he remained fast asleep and left his legs in the upright position whilst he continued to sleep. They stayed upright for a minute or so. Recently he has fought and twisted and rolled, spreading dung everywhere, and us all getting in a mess. Bless him.

During the night I am half awake and have the curtain around the bed pulled to keep out the light. I am happy to have the dim light on as it helps the staff who are regularly in and out. Otherwise they crash around with torches and we end up waking anyway.

I thought I saw a couple of bright flashes and was puzzled at this, because at 0130h in the morning you do not expect photographers moving around. Anyway, I was tired and nodded off until about 0300h or something like that, when I heard Fred choking. He does this often unfortunately.

I got out of bed and found Charlie dealing with Fred, and he calmed down. In the gloom she asked if I had spotted “the present” but as it was early I admitted I had not. The nurses come in very quietly and often you do not know they are in the room because it is dark. In BMT I used to get out of bed and walk a few paces and nearly step on one that would always crouch by the side of the bed trying the read the volume of drug given on the pumps. I keep asking they wear a bell or a flashing light or something as it is frightening sometimes to find someone hunched up by the side of your bed.

Anyway at the foot of the bed was a photograph of Fred she had taken earlier, with him having carefully placed a dummy on his ear, looking like a huge hearing aid or an earplug. She had come in and seen it, and nipped out to take a picture – hence the flashlight earlier….


He has been fidgeting with his ears recently and this is why he has put it there.

It was a great picture, so I tried to strip the picture off the camera to put it on to Rachel’s lap top, which did not work so I tried various other options. By 0400h I was wide awake, and so in the end we ended up with me taking a picture of the picture on my camera, and then transferring it to the laptop, and then cropping the image. I was wide-awake by then and there was little point of me going back to bed.

I should have put the picture on the Gallery by the time you read this.

He gets some more pain relief during the day and Rachel comes back. Just as she arrives we are advised that he has got a slot for an x-ray and an echo scan of his abdomen. He was due at 1600h that afternoon but I sad he may as well go with Alice, his nurse, whilst I go back to the house with Rachel to get some things. Fred knows the score now and would be happy with Alice, as would we, so he gets plopped into his pram, and off he goes for 30 minutes.

I pack my stuff into the car and we both have some lunch on the way back to the hospital.

We have our lunch in Fred’s room which is quiet and empty without him. The door opens and Fred is wheeled in happily. Apparently he was very good when they did the echo, which he normally is. This is where they use a handheld scanner covered with thick gel and his tummy is scanned. It is the same (or similar to a baby scan) and the images look the same too. It looks uncomfortable because they can be quite firm with the probe and appear to shove it under the bottom of the rib cage to see things.

We will have to await the results of that. He has been having problems with his stomach and this is a way of checking things out. He will also have a BMA next week in theatres and will also have an endoscope down his throat whilst he is under. Again it is not something they do readily but it will enable them to have a look to see what is causing his stomach problems.

Before the transplant we were warned that it would be Fred’s most likely weakness and of course now it appears to be, though more subtle than we envisaged.

I head back again into fine weather and meet up with Hayley in the evening at the Wetherspoons where I tuck into a Surf and Turf which was most excellent.

I get back full and fall asleep without putting the radio on which is unusual.

Day 274 (Tue 03 Apr)(Day Plus 49)Wed, 04/04/2007 - 02:26 — endc011
He was settled most of the night but still occasionally suffered terrible stomach pains. He carries on a few times but generally sleeps well, as do I.

I wander up to the house in the morning to get some stuff and come back via the canteen as I am hungry. This is a different one to the one we normally go, but it has shut early. It advertises as to being open from 0800h to 1400h but does not advertise it shuts at 1100h for an hour. At 1045h all the food has gone and the tills are cashed up.

I get a surprise visit from Frances and she has not seen Fred for quite a while now. She thinks he is a lot bigger than he was and he is a little grumpy. He soon mellows and smiles a bit.

During this time we discuss his general well being and his pain relief and so hopefully he will be able to have some morphine or similar. Previously he has had it on demand, or PCA – patient controlled analgaesia. I would hope that if he gets pain at night, we can give him a blip of pain relief and it work quickly.

We also discuss his mouth which is getting a bit crusty again. I extracted a largish lump of gunge/tissue this morning with the suction device, and he was much happier. However it needs to be kept clear.

As his mouth may be sore still, he gets a gel coating which covers up any exposed nerve endings, and effectively “seals” his mouth lining. Apparently it is very good on the adolescents.

I see Frances off and return to be visited by Hannah the physio. We discuss his sitting up and posture which he is behind on because of his treatment and staying in bed a lot. We try a few things on the floor and find a comfortable position where Hannah’s left leg is a back support for him, and her right leg is a “table” in front of him. He is sandwiched between the two.

This enables him to sit upright with his own support but feel comfortable enough to relax and concentrate on what is going on around him. He can reach out for things that are at his “waist height” and look about. He seems happy with this, and when he gets tired, he can lean back gently and recline.

I scrunch myself down on the floor too, and Fred squeezes in with me. He adjusts himself and seems happy to do so. After a while he reclines to look and talk to me, and starts to drift off gradually.

Eventually he gets back onto his bed and falls asleep.

He also gets 20mls of feed via his NG tube and manages to keep this down, on top of all his other stuff.

He seems happier to sleep on his front now, or mainly his side. It is difficult to keep him on his back as he used to now. This is all OK, until I want to access his nappy.

I shall head back tomorrow as I have some business, and Rachel will take over the reins of keeping Fred under control.