Day 263 (Fri 23 Mar)(Day Plus 38)Sat, 03/24/2007 - 06:19 — endc011
Last night I chatted with a couple of parents back at the house until the early hours and then slept well.

Fred was his usual self too apparently and I appeared in the ward armed with bacon sandwiches this morning, which ended up a bit cold, but were nice all the same.

Fred has continued to drink well and is maintaining his intake and for that we are grateful.

I left mid morning to drive back home and for some reason seemed to lose an hour on the motorway so went straight into work for my meeting at 1400h. It was good to come back and did not seem as strange or awkward as I thought it might be. It was good to see all the old faces still sitting on their perches processing applications like elves and being generally chirpy. As I was not working it meant I could wander the planning department and chat, and then moved into Building Control next door where the relaxed and convivial atmosphere was still the same. Back for a chat in my office and then down to see the Environmental Health gang on the floor below. I had a long chat with Mandy and Terri in Licensing, which was good, and I popped back to my desk, which seems to have been frozen in time.

Emma has tidied my desk and drawers and discarded old sandwiches but discovered petrified Satsuma’s from the Christmas before. I checked my email and poked about the system and it all seemed to work.

I visited my mum and dad and then headed over to Wayne and Claire's, where I was transported to Wayne’s club for a few beers and great food, which also included a quiz and ents.

I get back to the house at around 2230h to find it all cold and dark, and do the ‘blog.

I was really pleased to read Helen D’s comment today that Rebekah is doing well. Hopefully our experience of the BMT ward and happenings in my previous ramblings will give them some insight into things and will help in some little way. As we were barrier nursed in iso. I spoke briefly with Helen and Rebekah on the day I was dragging all our stuff back to Ward 34 which was nice. Helen/Rebekah - I do not know what cubicle you are in on BMT but hope it is comfortable and that you are not in there for very long. Thankfully we do not have to wash the bed down every day on W34 with that D1 detergent that arrives in a sample tube, and looks like a wee sample.

The blue paper you get to wash the bed down stains the water in the bowl you get, although the tube is useful for a potential painted didgeridoo project when empty. I trust that Yvonne is still marvelling at my NHS Cash Cow, which is now nearing completion. When done it will be published here for all to marvel at.

Day 262 (Thu 22 Mar)(Day Plus 37)Fri, 03/23/2007 - 04:27 — endc011
Fred’s appetite grows as does the contents of his nappies, which need constant monitoring. Chemotherapy and a transplant play havoc with the digestive system and he has not really wanted any food since November, and has shied away from the bottle.

Occasionally he may have had 10ml of water or milk in the past but that would be infrequent.

Overnight he was unsettled and this was mainly due to being very hungry. I felt I could only give him 30 - 40mls of the milk at a time maximum, as his gut would be overloaded otherwise. Also I do not want him vomiting in his sleep and getting any in his lungs.

His breathing seems a lot easier now, and his oxygen has been gradually decreased so it is was 0.05 litres p/m when I left at 1745h this evening. If he gets upset his levels do drop, but not to anything to worry about really.

He sleeps a bit more now during the day, although last night I did not get much sleep anyway. After a couple of days it gets quite wearing when he is mumbling and griping, but then when you think back a few weeks to when he was seriously ill and taken to theatre, you have to smile at him and help him along, no matter how frustrated you may feel.

I was reminded the other day as to how ill he really was, by one of the doctors, and we are lucky Fred managed to pull himself back together again after his emergency visit to theatres in January.

The doctors are not sure what has sorted out his lung problems, but they are now beginning to stop a variety of drugs gradually as they become unnecessary. Some will be re-started no doubt, but we have started to get a couple of hours off the lines now, so that he is free to be moved about the room. He is theoretically still supposed to be on oxygen but he seems to be able to cope without it when playing on the floor with us. He still has a sats probe stuck to his toe that tells us his pulse and oxygen saturation level anyway, and the alarm sounds if it gets too low.

We speak with Sarah the dietitian today about our plans for feeding him. She is surprised at the sudden turnaround in Fred, but it is not unusual. At the moment he is receiving 100% TPN, or all of his nutritional needs over 18 hours, so any food we give him is a bonus to him.

He weighs in at around 9.5kg to 10kg at the moment, so it works out at around 100ml of feed per kilo, if the feed is 100 calories per 100ml. That’s 1000 calories or so in a 24 hour period. Previously he was getting 100mls of feed a day by the pump and by his NG tube and sicking a lot up, plus getting bad stomach cramps. This meant the pump (which ran at 5 – 10ml per hour) was regularly turned off to give him a rest.

Today, in a 24 hour period he has had 450mls easily, and wanted so much more. We do not give him the full amount as we want to let him have it gradually so at least he feels hungry and enjoys what he gets. If we give him too much and he feels unwell he may be discouraged somehow. In any case the TPN is keeping him going regardless.

I have put a huge pile of grubby suits in the boil wash as he is down to his last suit tonight so Rachel reckons she will borrow a tea cloth to wrap him in tonight if necessary. He really needs some clothes as he will tug at his line in his chest and we do not want that.

We have loads here but he is growing out of them and they get stained with “chemo poo.” He used to use the reusable towelling ones, which we would love to use again, but they would stain and it is difficult to weigh them and store them. Hopefully he can wear them again soon perhaps.

The dietitian thinks he may like the SMA White or “follow on” milk and will get this sorted. At the moment it is 100mls of SMA Gold which are good as they are ready made and can be kept at room temperature. They also can stay around for 4 hours too, as we only use parts of a bottle.

I may have said in one of my ‘blogs recently about Fred’s “target weight” and so I apologise if I am repeating myself. In October of last year one of the doctors (Hannah, who occasionally checks his developmental weight/length etc) had a discussion with us about his then weight. I was concerned at the time that Fred was not interested in feeding much, and his weight was gradually going down. The main worry was dehydration, and we did not want Fred to go “all crispy” as he has done before. That was a load more problems.

However his weight at that time 6.7kg when it should have ideally been 8.1kg if the chart in the Red Book is anything to go by. Each child is different and it is a standard comparison whether you agree with it or not. Hannah said to Fred that she wanted to see him hit 10kg by the time he was twelve months old. I thought that a) it was a long long way off and what does the future hold and b) that was a big increase from then.

On his first birthday he did indeed weigh a few grams under 10kg as predicted, although admittedly some of that was excess fluid. I remembered her words and in the run up to his birthday I was pleased that he had put on the weight gain gradually, and would meet his informal “target.”

I have not seen Hannah yet, but I shall thank her for her words of encouragement. And ask her who she thinks may win the Grand National this year.

I am returning to the Bay tomorrow to have a meeting with my office, as I have been away for nearly nine months now. My employer, Torbay Council, has been very good to me and the time has flown by in one sense. I guess time gets distorted in certain circumstances. It is now however, a time to review and take stock of our current situation and I hope we shall all be happy with whatever happens.

Little did I know on 30 June 2006 as I tidied my desk on that sunny evening, walking up the road with a colleague happily for a week’s leave, that I would not visit my desk until now. I had a free week ahead of me where I had Fred all to myself on Sunday and Monday, as Rachel went to stay at her mum and dads for a day or so without Fred for the very first time ever. That was the beginning of a very hot week where I met Amanda and James on the Monday and we wandered down along Goodrington Beach. Outside the old Brass Monkey we watched seagulls descend upon al fresco diners and steal all their food as they shrieked and ran back from the table

Day 261 Wed 21st March (Day plus36)Thu, 03/22/2007 - 02:26 — endc011
After Rachel and June had left yesterday afternoon his nurse came in and took him off his tubes for an hour or so which was good as it enabled Fred and I to get down on the floor and roll about.
Once free of the spongy bed and side rails he maximised his freedom by trying to roll as far as he can. This is OK whilst on the mat, but it means he rolls off onto the floor into something sharp. However, a few more toys come out and the tumbling tower of pots is regularly under attack from Fred. The animated Winnie the Pooh wanders to and fro in the background whilst Fred practices pilates.
He is starting to have a few drugs taken off now very gradually which is good. He really had been at his maximum after he came back from BMT.
The eveinings are getting lighter still and I watch the rush hour traffic whilst Fred sleeps quietly behind me. I do another sketch from the window looking down onto the T shirt makers and violin specialists. There appears to be a little repair workshop above the violin shop, as Rachel watched these chaps sitting in a line beavering away, with instruments hanging from the ceiling. She thought it was a kitchen or something at first glance.
As Rachel has the laptop (hers actually) I am typing this on my handheld, so mistakes may be in evidence.
Fred is eating solids a lot better now as he has been off it for a few months. However now, give him the spoon and he will bring it to his mouth. A bit wobbly but obviously now keen again on his food. If we can continue this it will be good for him and enable us to keep an eye ourselves on what he is eating.
During the night he is a bit unsettled but then is placated by some water in a bottle and then some milk. He was on vanilla Paedasure Fibre which he did not like so we tried him on SMA Gold once again. He had this quite happily. He had 100ml of liquid in six hours, though was a bit sick later on in the morning. Last week or so that was equivalent to around 24 hours worth of feed.
Having all this liquid slooshing down through his mouth means that it clears itself of dried bits and must make him feel a whole lot better.
Hopefully the problem with his lungs is clearing gradually as he is breathing in a much more relaxed way now, and his background oxygen is at 0.3 litres p/m still. His sats hover around 98% which is fine.
I can root about in the toy box Rachel bought yesterday and he tends to peer over the edge of the bed, to see what I am up to.
He does get presented with some old packaging from his presents and happily explores the empty insides with curiosity, every now and then looking up and whimpering at me.
Later on in the day he gets increasingly hungry. He even almosts jumps up and down when he sees the bottle of milk I have in my hand, and he follows me around the room, with his mouth open. Once he is positioned on my knee, his mouth remains open like a goldfish, as I fidget around to get the teat onto the bottle.
Fred has been a little unsettled today generally and has not slept a lot. Hopefullt it was because he is getting hungrier, but means probably more regular waking in the night to feed him. At the rate he is drinking that activity should not take too long.
I am at the hospital again tonight, and Rachel will return tomorrow morning.

Day 260 (Tue 20 Mar)(Day Plus 35)Tue, 03/20/2007 - 21:34 — endc011
We had a great night last night and Fred slept soundly too. A few hacking sounds and he would sort himself a bit later on. The sleep ended at about 0500h when he awoke and wanted some constant attention.

I had my breakfast of toast and jam plus a cup of tea and then Rachel and June appeared. Fred was limbering up for his music lesson already and we had been practising earlier today.

The doctors come in and have a look at him. His blood counts are doing what they should and his CRP level has dropped to less than 10 which is good. His neutrophils are 3.99 today and his WBC is 4.55. If he gets a temperature he will get another platelet transfusion.

The respiratory team come to have a look at him and one of the doctors we recognised. He was at Torbay Hospital on the July 8 2006 working in A and E and saw Fred in the late evening, a couple of hours after we brought him in. If you look back to Day One he was one of the few that came in when Dr Sainsbury told us Fred had cancer.

He recognised us, and was amazed that we had been here without going home really since last summer. He was pleased with Fred’s recent progress and was happy for Fred to have his oxygen reduced gradually. I took of it for half and hour or so and he maintained a level of around 95%+ which was good. He is currently on 0.3 litres p/m

Mark, Amanda and James appear in the late morning as they are passing by. We went for lunch with them, and as Amanda had a cold they did not come in and see him. James was on fine form and ate like a horse.

Fred has his music session and enjoyed it very much. He also got a few more presents in the post as well as from staff and he was happy with all this attention.

When we come back he is fast asleep and soon wakes wanting some grub. He gets some solids a bit later sitting up in his bed.

Rachel heads back with the laptop and so I may not be able to post the ‘blog tomorrow in the normal way.

Day 260 (Tue 20 Mar)(Day Plus 35)Tue, 03/20/2007 - 21:34 — endc011
We had a great night last night and Fred slept soundly too. A few hacking sounds and he would sort himself a bit later on. The sleep ended at about 0500h when he awoke and wanted some constant attention.

I had my breakfast of toast and jam plus a cup of tea and then Rachel and June appeared. Fred was limbering up for his music lesson already and we had been practising earlier today.

The doctors come in and have a look at him. His blood counts are doing what they should and his CRP level has dropped to less than 10 which is good. His neutrophils are 3.99 today and his WBC is 4.55. If he gets a temperature he will get another platelet transfusion.

The respiratory team come to have a look at him and one of the doctors we recognised. He was at Torbay Hospital on the July 8 2006 working in A and E and saw Fred in the late evening, a couple of hours after we brought him in. If you look back to Day One he was one of the few that came in when Dr Sainsbury told us Fred had cancer.

He recognised us, and was amazed that we had been here without going home really since last summer. He was pleased with Fred’s recent progress and was happy for Fred to have his oxygen reduced gradually. I took of it for half and hour or so and he maintained a level of around 95%+ which was good. He is currently on 0.3 litres p/m

Mark, Amanda and James appear in the late morning as they are passing by. We went for lunch with them, and as Amanda had a cold they did not come in and see him. James was on fine form and ate like a horse.

Fred has his music session and enjoyed it very much. He also got a few more presents in the post as well as from staff and he was happy with all this attention.

When we come back he is fast asleep and soon wakes wanting some grub. He gets some solids a bit later sitting up in his bed.

Rachel heads back with the laptop and so I may not be able to post the ‘blog tomorrow in the normal way.

Day 259 (Mon 19 Mar)(Day Plus 34)Tue, 03/20/2007 - 02:14 — endc011
Today is Fred’s 1st birthday and so I thought I would quickly look back on the last twelve months of his life.

On the 20 March 2006, at 0052h I sent the following email to our friends, colleagues and family to let the world know that Frederick James Wills had arrived - nearly three weeks early……

“Hello

Some of you will know already, but Rachel gave birth to a little boy - Frederick James - at 0004h on Sunday 19 March 2006, and he weighed in at 8lb 2½ oz. Mother and son are both doing fine and will hopefully be back at home toward the end of this week.

For those interested in the minutiae, Rach started going into labour at 2200h on Thursday and had a particularly difficult Friday night so at 0600h on Saturday morning we trooped over to Torbay Hospital having been advised a couple of times on the 'phone that it was probably a 'practice' run, as she had three weeks to go. Having only taken a few paracetamol by then, staff revealed she was actually already halfway through her efforts and baby was likely to appear in the next three or four hours at that rate. Nearly 18 hours and serious discomfort later (with only gas/air plus a bit of Shiatsu) baby was stuck proper, having not travelled any further down, and Rach and baby had started to get into difficulty.

She then had an emergency caesarean and so little Freddie was born a few minutes later without complication. I managed to supervise the whole event by peering around the screen to watch proceedings, giving appropriate advice where needed of course. I would liken it to someone being extricated from a vessel of chilli con carne.

Rach is much better today and the we'un is looking more photogenic (?) than when I first met him.

I hope the photos do not bore, but they cost me nothing to send.

Kind regards, and thank you for the messages we have received so far.

Tim, Rachel and Freddie Wills

P.S. Hayley - can you circulate as you see fit? T”

One year on and a lot of water has gone under the bridge so to speak and our hopes and dreams have been somewhat altered. We do not know what the future holds, and so today I do not want to dwell on that at all.

We both winced at the times he had his inoculations prior to being diagnosed. Now it is second nature for us to see him have a tube thrust down his throat, or have a needle poked in him, or for him being wheeled down to theatres. I counted the consent forms the other day for him going to theatre and these came to nearly 30.

At the moment he is on 21 drugs in a 24 hour period, every day, some of which are potent. The nurses have difficulty in keeping up with the time to get them in, in the 24 hours, as there is a complicated juggling act to maximise the potential from his “line time.” On top of the 21 drugs most have to be followed by an inert “flush” of liquid to clear the line of that drug (to get the measured amount of drug into his body) before the next one can follow on.

What ever that volume of liquid is, he needs to wee it out to stay at his true fluid balance. Hence the importance of the diuretic, Frusemide.

My distinct memories of one year ago are coming back to the house at 0400ha few hours after he was born, and still having the sound of “whooshing” heartbeats (from the monitors) sounding in my ears even though the house was completely empty. Fred had jaundice for a few days and I remember leaving the hospital and driving off up the dual carriageway near the hospital one night - 2200h - and looking back to see Fred and Rachel’s ward window glowing brightly with ultraviolet light. This was his treatment for jaundice.

Also when Fred was born I thought he smelt faintly of chlorine, and I could detect this still in our house for a day or two after he returned home with us, particularly if he was not there.

Rachel ended up climbing the walls almost toward the end of the week as both of us wanted Fred back at home with us, but the hospital kept hanging onto him. Driving back home with Rachel and Fred for the first time was a slow careful event, with him in his new car seat. Our cat (a stray named “Peanut”) did not take any interest in Fred on his return although we kept him away for a while, as we did not know how he might react to a little baby.

Sadly Peanut had to be put down unexpectedly in the first week Fred was in Bristol whilst we were away because he too became ill. I still have his little fluorescent collar and bell on the shelf in an envelope, which my mum and dad kept back for me.

I collect my mum and dad and head to Bristol to see Fred.

I rang Rachel and found that Fred was unsettled again, though had been quite good.

Fred had a stack of envelopes and some bags of presents which look very tempting to him, and us. We open the envelopes first and read them out to Fred. We put each card around him but he soon knocks them down. He does pick most of them up though and we have to be careful he does not drop a card on to his eye or something daft like that.

The eye hospital is opposite his window so would not be far.

The presents are then opened although he is denied wrapping paper.

He has a wonderful selection of presents, including several musical instruments which are brilliant. Noisy drums and a football rattle startle him a bit at first. There are some books too, and he likes these and does spend time studying the images and we can read them to him as well. He has quite a library which is good I think.

He has received a few cards from the staff and Kate, the sister, came in and sang him “happy birthday” and they gave him two presents which were well received. That was very kind of them.

We had a small buffet lunch and some cake later with a single candle on it.

A couple more gifts were received in the afternoon and these were offered to Fred and he loved them all. He is very inquisitive about the things but wanted to go to sleep at times. He hung on in there for a bit, and at the end fell fast asleep.

He had an NG tube replaced today as he tugged it out. He has been drinking water and milk from the bottle which is more progress.

I feel like a nap and so will post the ‘blog now. He had a lovely day and will limber up for some thank you letters soon I hope.

Thanks. I may have time to post some photos shortly.

Day 258 (Sun 18 Mar)(Day Plus 33)Mon, 03/19/2007 - 02:47 — endc011
On the 11 December 2006 the Daily Mail, Daily Express and Western Daily Press ran a story about Frederick in relation to the Anthony Nolan Trust’s Donor Appeal session at Torquay (on the 13 December) arranged by my employer Torbay Council. The session was “inspired by Frederick….” but was not arranged to try and find a donor for Fred - as he had one lined up previously (although had not been able to because of medical complications.)

The articles appeared without our knowledge suggesting that Fred “might not live to see his first Christmas if a donor was not found” by then. We were unaware that the articles were being going be printed, and therefore were subsequently not happy with the content. To unexpectedly read in the national newspapers that your son may die within the next couple of weeks without any factual input from us was not acceptable, and caused our friends and family unnecessary distress at that time.

We submitted formal complaints to the three newspapers who, once aware of the facts, agreed that some parts were not accurate and so apologised accordingly, which closed the matter as far as we were concerned.

The article was found to originate from a news agency that had sourced the story from our local newspapers, the Herald Express and Western Morning News. As we did not get a response from the agency we pursued the matter through the Press Complaints Commission (PCC).

In this instance, they do not have any jurisdiction over news agencies, only newspapers and magazines. However the agency agreed to the Commissions involvement and subsequently apologised to us for the inaccuracy. The monies we received went to the Bone Marrow Transplant Ward where Fred was a patient until recently, and to the Complementary Therapies Trust of same ward.

We are happy at the outcome and the matter is now closed for us. The following appears on the PCC website as the resolution of the matter, and it can also be found on the following link:

www.pcc.org.uk/news/index.html?article=NDQ0Mw==
“Complainant Name:Resolved - Timothy Paul Wills v. South West News Services
Publication: South West News Services
Complaint: Timothy Paul Wills of Devonshire complained that the news agency had circulated a story to the press inaccurately suggesting that their son could die in a short space of time unless he was found a bone marrow donor.
Resolution: The news agency emphasised that its intention was not to cause the complainant and his family distress at a difficult time and offered its apologies for the article which came to be published from the information it had supplied. The complaint was resolved when the complainant agreed to accept the news agency’s offer to forward all monies from the article to a charity of his choice.
Report: 74”
The two of them had the usual long night though Fred was quite chirpy by early morning.

The nasal prongs which blow oxygen up his nose irritate him and so they spend more time out than in. One of the Outreach nurses from PICU reckons he can come off the oxygen and this happens for a few hours, with him having sats. of around 96%.

The doctors later reckon that this might be a bit too early, but agree to turn the rate down to 0.3 litres p/h, and he seems fine with this.

His mouth is quite clear now and so Rachel tries him with some bottled water. He drinks 20mls which is good for him and reassures us that he has not forgotten to drink. One of the problems can be that children lose interest or the ability to suck when deprived for so long. He still loves his dummies though, which we always have dipped in chilled sterile water. He loves that when his mouth is dry as a bone.

He has a lively day and seems to be happy which is nice.
I went to see James my godson in the afternoon and was entertained by his Prince Charles impressions and chewing action. And some wet kisses too.

I had some tea over at my mum and dads, which was another nice change. I also go out for a drink with my dad at lunchtime, although forgot it was Mothers Day and the pub was jam packed.

Fred and I did not forget it was Mothers day, although my little project with him did not actually happen. Hopefully it will this week.

This time one year ago Rachel was in the Delivery Suite, after being admitted at 0630h. We plodded along until about 2230h when his heart rate went up to 180BPM for a long while. I photographed all of the notes before they were returned to the midwives, and so today had a look back through the day.

Day 257 (Sat 17 Mar)(Day Plus 32)Sun, 03/18/2007 - 05:41 — endc011
At around 1730h last evening we saw a trolley arrive outside the room and guessed it was for Fred who was flat out asleep. He was due some platelets as they were low again, but Rachel -the nurse - wanted 30 minutes warning so he could have them before theatre. Unfortunately the trolley arrived without warning…..

As he is going to have a tube, or telescope, put down his throat he will need a decent level of platelets to deal with any trauma in the throat as it goes down and comes back up again.

He is hurriedly hooked up and given the platelets, and is then wheeled off to theatre. The trolley is much larger than him and as he sets off he looks very tiny. I am not allowed to accompany them this time as they have tightened up on excess numbers of people going down to theatre. Rachel will normally go in with Fred to receive the anaesthetic and I will sit in the waiting area until they come out. Unfortunately we are unable to do this so I stay in the room.

He goes down and the procedure is expected to last no longer than 20 minutes or so. I fidget around with the laptop and try and get back onto some wireless network but to no avail. I dig out my mobile phone for internet access and it still works but is a bit slow and more expensive. OK for posting email and bits of the ‘blog but not so good for browsing.

He comes back around 40 minutes later and is carried up by Rachel in her arms. He looks quite happy and settles into his bed quickly though is breathing a bit heavier than before. His sats. seem to be OK, but he will now be on about 3 litres p/h.

He seems to do fairly well with the breathing and sats and it is decided to try and wean him back off the oxygen as he is ready, though this will be done gradually and the current oxygen levels have their advantages and disadvantages.

Rachel headed back to the house to do the washing and ironing and get some well earned sleep.

One of the doctors comes in at around 2000h to have a look at Fred and seems to be happy with his current condition. He explained that he had received three sets of results from the laboratory and that they were all negative. One of them was PCP or pneumocystis pneumonia which sounds to me to be something he does not want at all.

Again this is good news but the problem perplexes them. However there is a further test that needs to be analysed and this is a culture of what they took so will take a few days to grow in the laboratory.

I do not know what the bug could be, and we hope it is not an uncommon or virulent thing, especially as he low on his defences.

We wondered why he had been fine up until theatre and then emerged with a bug in the few minutes afterwards. They explain that he may well have had an infection before that he could mask from us as his body was compensating for the problems without anyone noticing. The GA may well have tipped him over the edge, and this manifested itself the way it did.

His evening is quite settled and I then decide to crack on with finishing the NHS Cash Cow. It gets some black and white markings, plus grey horns and hooves, and then a pink snout. There needs to be a lot more detail put into it though.

Fred has started to get envelopes in the post and the porter delivered a few this morning which was exciting. I shall take a photograph of them before he opens them on Monday.

As people in the hospital do paperwork about him, one of the regular bits of information is his date of birth. As the day gets closer they start to comment that he will be one soon……

He is very unsettled during the night and I do not really get any sleep until about 0600h. At about 0500h I hear two people discussing Fred quietly in the room, and one is a voice I do not recognise. Ilater learn that it was on of the on-call doctors from somewhere else who has been called to have a look at Fred as he is laboured in his breathing again, but they do not feel there is anything of concern.

I seem to see each hour in and it goes very slowly but soon the sun rises again and it starts to get normal again.

I am delivered some toast and jam and a cup of rather nice tea and so it starts the day well. We have changed his bed a couple of times as he was a bit sick once during the night and also wee’d whilst I tried to change him. That was the diuretic working and I had forgotten the time he had it.

Rachel came down and we sorted Fred out who was quite happy at times but a little grumpy.

I gathered my things and headed back to Torbay.

During the day I spoke with Rachel and learnt that during the afternoon Fred had started to have difficulty in removing a phlegmy lump from his throat. He started to splutter so Rach called the nurse and so the doctor was nearby and managed to dislodge it from Fred’s throat. He used some prongs to remove a small solid grape sized dry lump, which we later had found had dropped off the roof off his mouth. It has been there for a day or two and was sent off for analysis. The roof of his mouth apparently looks totally normal which is good. He has been having a mouthwash which the dentist prescribed, so as to dislodge all dry matter.

With him having a background of oxygen, it will dry his mouth and nose out a bit too much. His oxygen amount has been decreased from 3 litres p/h to 1, and he seems to be able to be weaned off gradually.

Earlier I turned his oxygen down which still showed a high oxygen saturation level, but he was having to work a bit harder to compensate for it, so was puffing more. Again it is another fine balance to get this right without reducing his oxygen too early.

He has been quite chirpy since then and hopefully this will make him a bit happier.

I went into Torquay to get a few presents for his birthday and then went over to mum and dads to get my post and catch up with the local news.

I was lucky enough to be offered tea at Paul and Dawns, and had a great feed without me having to cook. Some wine and beer went well with it all and I caught up on some scandal too. The evening was rounded off nicely by me having a lift home from Charlotte and Emily, so no late night walking for me.

The heating is on again and I shall have a bath tomorrow morning, but I do not have any Dettol.

Day 256 (Fri 16 Mar)(Day Plus 31)Fri, 03/16/2007 - 22:16 — endc011
Yesterday they took off the “barrier nursing” restriction and so it meant I could head to the parents kitchen and use the computer once again. Apparently the test results had been clear for three weeks and so it was lifted.

Today we are told we are barrier nursed again, so our few hours of freedom are short lived. Little things like that can seriously p*** us off when stuck in here for eight + months. Not the hospitals fault but annoying when the results seem to be erratic.

The good news yesterday was that the more detailed tests showed the marrow as clear from disease. Also the results of the chimerism test were that at this stage the marrow being grown by Fred is actually 100% donor. This all sounds great, but it is early days yet. It will be a long while before we know more of course.

Fred has a busy day today, the busiest for a while. When I get in Kate is in doing an assessment on him. She is doing a Masters at the moment and so Fred is a case study. He is then visited by the physiotherapist who has a look at his breathing. This was followed by Hayley from PICU, a couple from the respiratory team along with Michelle, followed by the dentist to look at Fred’s mouth followed by Julia the music therapist, followed by someone from cardiology to do an ECG on Fred.

We then took him up to level 6 cardiology, for an echo on his heart, and this came back clear thankfully.

The respiratory team came to assess Fred as he is due to go to theatre for a bronchioscopy later. This involves him having about 20ml of saline put into one of his lungs, and about half removed again. They can do one test fairly quickly, though some other test results will be available on Monday.

I sign the consent form and there is some chance that he will come back more poorly than he went as, obviously fluid in the lungs is not ideal. Ideally that should clear within 4 to 6 hours. However, if needs some help he might need to be transferred to intensive care later this afternoon for a bit.

Fred is still needing oxygen and seems happy in himself, and has been rolling about today and being very mischievous.

He enjoyed his music lesson again and took part even though he might feel a bit puffed out.

Unfortunately the internet connection I could connect to yesterday has locked me out, so I am not sure what I shall do on the ‘blog front, as email on my phone is not working either. However I am, at 1515h, sitting in the Whitehart on Lower Maudlin Street posting the ‘blog in a fug of smoke and Friday PM drinkers. I have had to have a pint to enable me to sit here. I could have sat on the steps outside I suppose but there is a Big Issue seller plying his trade there at the moment. Must go as some are spying my laptop with curiosity…………….

Have a good weekend anyway.

Day 255 (Thu 15 Mar)(Day 30)Fri, 03/16/2007 - 22:15 — endc011
Neither of us had a good night, with Fred stirring most of the night to retch and wriggle. I ate too many chips with my fish, bought from the chip shop up the road from the hospital.

His respiration rate remains high so he comes across as blowing like a train. During the night it drops to something a bit more normal, though increases again during the day.

As he is panting, his nose and mouth remain dry and probably uncomfortable. We give him a saline nebuliser, which is basically a fine mist of saline in a mask that is waved under his nose. 10 minutes of that he seems clearer and sneezes – dislodging a couple of raisin sized bogies. He will also start a sodium bicarbonate mouthwash to help him, and we will do that by using the foam lollipops soak in it, and squish it around his mouth. It will taste a bit salty but will be refrigerated.

His normal rate is around 40 breaths per minute, but is easily around 80, which makes him look like he is panting. His oxygen saturation levels also gradually increase as the day progresses. He was on 1 litre per minute, which then was kept at 3 litres per minute for most of the day. Whilst he is dozing it can be knocked down a bit.

Michelle comes in to say that the detailed examination of the marrow sample did not show anything untoward, and she described this as “normal” and that the Chimerism results would be available tomorrow. That news was a big relief to hear. We now hope the chimerism shows that the sample is 100% the donors or something very very close.

The x-rays show that he may have an infection or it may well be some fluid, or both. In order to ascertain what the problem is he heads down to x-ray for another CT scan. This is to scan the chest and is like a large doughnut that makes a whirring sound as you pass to and fro in it (see photograph).There is some reluctance by all of us that he has another general anaesthetic, so goes down without. He has had two other scans without GA, and just needs one of us to hold him. I stay in the office which overlooks the scanner, and watch the images coming up on the screen. Fred shouts a bit at first and Rachel stays at the head of the sliding bed, to hold his arms above his head. He does as he is told and the images look clear to me from where I am standing.

His breathing and sats seem to stabilise over the day which is good for Fred, as he can rest a bit more.

He may have a bronchoscopy tomorrow morning which will involve another anaesthetic although a mild one to sedate him. They then pass down a tube and some fluid into the lungs and suck it back up to get a sample. That will give some indication as to the problem.

He seems to be more relaxed now and is back waving his hands madly.