Day 48 (Thu 24 Aug)
Fri, 08/25/2006 - 01:22 — endc011
I am heading back to Bristol today and get back here about lunchtime. June has stayed the last couple of days with Rachel so Fred has been looked after.
As I stroll down the corridor to W34 I pass a couple of doctors who say that Fred is doing well and drinking lots. This is good to hear.

When I get in I find my brother Duncan in his cubicle too. He was passing Bristol so popped in to say "hello" which was nice. Fred was dozy at the time but was due a feed. He was looking good to, given the circumstances. As Fred awoke he was very alert again.

He had his feed happily and he is now on 110mls every three hours. He seems to be tolerating them so hopefully this will give a much needed boost. He looks around all the time smiling whilst feeding and does not concentrate properly. After all that starvation I would have thought he would get it down quick. Not much spillage though and therefore no waste.
Duncan heads off and I let mum and dad know the latest on Fred.

He is looking a bit grubby today, so he gets a warm bath. He is not connected to anything so it is a doddle to plop him in the bath for a scrub. Provided his Hickman stays out of the water, he can splash as much as he likes. He seems happier in the bath than last time, and all his nooks and crannies get sponged. He shouts when his little amount of hair is washed, as well as his face. Back into a warm towel on the bed and he gets sleepy again.

His feet have reduced in size considerably and are all wrinkly like the rest of him. He is still baggy. When he was full of fluids he was either "boggy" or "soggy" and now he is "baggy." Poor Baggy Fred.

We have some lunch at the pub and I claim the remainder of my prize - the spirit and mixer. We need more nappies for Fred and have now started to buy "new born" ones as he so small. The other ones leaked around the legs which was OK until Fred was on your lap.

Late afternoon meant that his next course of chemotherapy started. This is given over three hours alongside a fluid supplement that will last six hours. He will also get a drug that deals with any possible damage to the kidneys as well as an anti-sickness drug. He will have some more tomorrow and I gather this course will be stronger than the first.

His WBC is currently 7.7 and this will start reducing in the next seven to ten days I think. They are mindful of his fluids though I think the volumes are alot less on this one, or at least not over such a time. I hope the recent good behaviour of Fred means he can concentrate on fighting any problems that might occur.

He seems a bit sleepier today and nods of more quickly. In the past he seemed keen to stay awake.

I brought my video camera back, the one i bought fro my 40th. I have a load of footage of Fred since his early days being out and about with us. It covers all sorts of mundane activities as well as the regular visits to the grandparents houses. The last video was four days before he went to the doctors. I was on leave that week and met Amanda and James and we went down to Goodrington for a wander. It was roasting hot and Fred was covered in the visible sun cream. He looked a bit odd but we did not want him catching the sun. He seems totally normal in the video there, as well as back at my mum and dads immediately afterwards. There is on his back playing with my dad, with Fred trying to swipe his glasses. Again, nothing untoward in the video.

Hopefully Fred will have a good evening. I do not know how long before it starts to take affect. A Bank Holiday is approaching so I do not know what the staffing levels are going to be.
And no MRI results either today. I suppose with the Bank Holiday approaching we will find out sometime next week. I think we have been waiting two maybe three weeks. Will chase them again I think. I look at my watch and it is 1845h so I guess it is tomorrow now.
Fred says check out the new "glossary" link and:

Over the next few days I am interested in finding out how many people are reading this 'blog thing. If you can just leave a comment it will give us some idea. Just a "hello" will do. You do not have to, but I am curious as is little Fred. I think I have only actually told a handful of people and some have passed it on, which is easy to do via email.

Day 47 (Wed 23 Aug)
Thu, 08/24/2006 - 04:27 — endc011
As I am in Paignton for a day or two I met up with Hayley, Graeme and Leoni last evening in the Isaac Merritt. Great to see them although the food takes an hour to arrive. We are all hungry by then and the excuse is that the kitchen is not very big. Still, the service is normally very good so I reckon it must be a hiccough.

I have one of the best nights sleep in a long while, and don't wake until 1100h as our alarm clock no longer works. I have a few jobs to do today and get on with it after a long hot bath, and having lunch at mum and dads.

I speak to Rachel a couple of times during the day and she updates me on his progress.
Fred is on form again today and seems the chirpiest ever. He had a blood transfusion last night so this probably explains it.

Joanna came in and basically repeated what Pam the oncologist said about his planned treatment. He will have two chemotherapy drugs that he has had before plus another new one. It is hoped that he will not get as ill as last time, as I have previously mentioned, but we will have to see. Joanna explains that there are likely to be new things occurring during his treatment. I feel sorry for Fred as I reckon he might think it is all over now - little does he know. In any case hopefully he will never recalls all of this horrible time for him. His treatment is planned to start tomorrow.

No news on the MRI scan yet despite Rachel chasing it.

Rachel's dad Colin visits today as well as Gaye, and Fred is well behaved. One thing I did miss whilst being here was when they went Freddie was permitted for the FIRST TIME EVER to be wheeled to Reception to say goodbye to them. Apparently Sam the playgirl thought it would be OK and checked with staff who said "yes." Fred's eyes were wobbling about in the lift as I guess the excitement must have been too much for him. He has not seen the outside world for a month and a half. That is another little milestone he has passed.
His feeds have increased a bit since I last 'blogged. He had 85mls today on a couple of occasions and this has increased to 110mls before Rachel left the hospital. I am not sure whether this amount can be sustained by him but Fred has blagged it somehow, and the doctors are aware. He has lost his bag of TPN too which I suppose will be compensated by the increase in his milk feed. His weight has dropped another few grams though. I had another look at his Red Book today and see that four days before he was admitted to BRCH he was 6.86kg which is only about 0.6kg more than he is now. He is six weeks older but he has been in 'suspended animation' for that time on very little food that will fatten him up, so I am a bit more happier with his weight.
So that was the good news on Fred today.

I went into Sainsburys today to pick up a few items and bumped into Nicky a friend from the office, as well as Mary whom I have known for many years. We had a chat about Fred and his progress for a few minutes and it was nice to see them. Fred seems a popular little mite and everyone we have met have been so kind.

I have also created a "Glossary of Terms" which will hopefully explain some of the abbreviations I have been using. Have a look at the link over to the right of the screen.

Remember:
Over the next few days I am interested in finding out how many people are reading this 'blog thing. If you can just leave a comment it will give us some idea. Just a "hello" will do. You do not have to, but I am curious as is little Fred. I think I have only actually told a handful of people and some have passed it on, which is easy to do via email.

Day 46 (Tue 22 Aug)
Wed, 08/23/2006 - 01:45 — endc011
When I went in Fred was being fed and was swaddled up in a blanket and looking very content. He had just finished his 50mls and was about to be weighed.

I changed his nappy and gave his bum a good wash down and he was popped on the scales for his twice daily ritual of weighing. He had dropped once more down to 6.28kg as he had been weeing alot. The Red Book reckons he should be 7.5kg in normal circumstances at 22 weeks which he obviously isn't at the moment. His feet are still a little puffy and he is positive on his fluid balance. I think that it is a fine tuning exercise now as they do not want him to get dry, nor soggy.

He seems the same as he has been over the last week or so with lots of smiles. I have a number of photos taken in the last day or two that I will upload onto this site later on.

He has six eyelashes on one eyelid and four the other. The good thing is once they are gone they won't get stuck in the little peepers. It's nearly impossible to fish them out, so I leave them. I think he can do without an eye infection.

The Renal Team come in to say that his tests for his kidneys are looking good and that this will mean he should be able to make the maximum of his chemo. I do not know when the chemo. will start but they need to work out how much he was going to get. That is some good news at least.

No news again on the MRI results today. The doctors have been fairly scarce on the ground though we will try and nab them tomorrow.

He had a session in the playroom as well which stimulates the brain a bit. When he was in there he was able to watch the TV and look at all the bright objects around him. Hannah also gave him a workout which would have tired him out.

His feeds have been increased again up to 60mls every three hours which he is happy with. If he gets too much I think he will sick it back up again.

Not much happened up to the time I did the 'blog. I will add those photographs once I have sorted a couple of problems.

And do not forget.....
Over the next few days I am interested in finding out how many people are reading this 'blog thing. If you can just leave a comment it will give us some idea. Just a "hello" will do. You do not have to, but I am curious as is little Fred. I think I have only actually told a handful of people and some have passed it on, which is easy to do via email.

Day 45 (Mon 21 Aug)
Tue, 08/22/2006 - 01:32 — endc011
Just before we left last night Fred started to become quite distressed rapidly and we noticed that his whole body seemed to be much pinker than normal. It looked like he had just come out of a hot bath and his temperature had by then started to rise.

The nurse paged the doctor, and Fred continued to be restless for about 15 minutes or so. By the time the doctor had arrived Fred had calmed down again, and the rash had disappeared. They did not know whether he had just had a reaction to something (though he had nothing new before his little incident) and so they decided to monitor him. The whole episode lasted no more than 20 minutes, but illustrated how he can go from being a laughing and chuckling Fred, to a bawling baby with a possible problem.

Rachel got in before me today and Sarah had been his nurse again. He had been a good boy overnight and he remained the same through the day with me. He was a little grumpier than usual, but has been having slightly increased feeds again. He is upto 50mls now.
I had a chat with the doctors who remain pleased with his progress so far. They are trying to balance out his fluids a bit, and reviewed his dietary requirements. The idea seems to be more milk, and so hopefully the next day or two will see this happening. It will certainly appease Fred. His blood all looks good at the moment.

I raise the question of the MRI and CT scans and apparently they are awaiting some information. The doctor I spoke was surprised that we had not heard anything yet and went off, promising we would hear tomorrow. We shall wait and see and once again, fingers crossed.
He also was administered a radioisotope which relates to the testing of the kidneys. He had regular blood and urine tests during the day, and the results should be known tomorrow afternoon. Hopefully they are what the team want to see so that Fred's chemotherapy can start to progress once again. It should start Wednesday or before if all is well.

Fred's weight caused a little concern as he is now down to 6.3 kg. The dropping is mainly from Fred shifting his fluids a bit quicker, and they will be able to balance this hopefully by adjusting his input over the next day or so. He really is quite baggy at the moment, with his wrists having a diameter of about 80mm.

My mum and dad visited today and Fred was in his pram resting. He was pleased to see them and entertained them as best he could. We had lunch in the canteen for the first time and that was actually really good. I did not have to pay.

He had a physio session with Hannah, and he enjoyed that. It gets his arms and legs going and we ended up with on the lap looking back at us, with his little legs wrapped around my side. This gives him a comfortable position, and can see me and we had a good talk. Lots of smiles. Because he is quite weak, he gets tired easily and 10 minutes of concentration make him flag a bit.

A few staff who have been on this week come in and remark how much different he looks and how perky he is. He grins at all of them.
Toward the end of the day he gets a bit gripey as I think he is tired. I also take a look at this bum as I can recognise a familiar cry.... the previous "wounds" all appear to be OK, but one or two look as if they are wet. When I dab some cream on them he howls like mad. They will get the cooled gel strips in tomorrow morning hopefully as we do not want a repeat of the last time.
I may head home tomorrow if Fred is OK and has a good night. Rachel will be back in the morning with her mum, so Fred has more visitors!


Day 44 (Sun 20 Aug)
Mon, 08/21/2006 - 00:20 — endc011
Fred was just staring into space this morning when we arrived minding his own business. He burst into a big grin once he saw us by his bedside. He was pleased to see a friendly face, but had had a good restful night according to the staff. He had just been fed his 40mls of milk so was relaxed.

Most of the day was like the previous few, in that he was very settled and seemed happy. He patiently waited for his feeds and routinely filled his nappy.
Pam, the Oncologist came in and said that they were pleased with his progress so far in that he was slowly but surely balancing his chemicals out. The number of drugs he has been getting has dropped down to the minimum, though they still test his blood regularly and tweak his doses accordingly.

She touched on the subject of Fred's next course of treatment. This is to start week commencing 21 Aug, though they have yet to fine tune his dosage. This will depend on the results of a test tomorrow where they give him a drug and this will measure how effective his kidneys are more precisely. Due to his previous problems it is critical that everything is sorted before they start. I think they measure whats in his urine at some stage.

Fred was due an increase on his feeds so after some debate we decided that 45mls would be better than the proposed 50mls. I would rather he got used to the amount slowly, rather than sick it up again, and they reduce the amount back to a tiny amount. At least on Monday he can have the big 50 of milk.

His chemotherapy will consist of the some he has had already, plus some he hasn't. He will get the usual one intrathecally plus some intravenously. I think one was orally so is in a crushed tablet form and I suppose that will go down his NG tube. This will go on for four weeks and then will stop if all goes to programme.

I do not know what effect this new stage will have on him. Previously he was really ill but I think that now the majority of the leukaemic cells have gone, then this might be easier on him. Before he was going from being untreated to treated, and this hopefully is a natural progression for him. I expect some illness will hit him, and he will become neutropenic again so will be at risk of infection.

However, I hope that his week of rest will stand him in good stead for the next bit.
I hope to be able to have a few questions answered but it is all dependent on so many things.
The results of the MRI and CT scan are supposed to be known tomorrow, so his little "holiday" is drawing to a close for a bit.

Over the next few days I am interested in finding out how many people are reading this 'blog thing. If you can just leave a comment it will give us some idea. Just a "hello" will do. You do not have to, but I am curious as is little Fred. I think I have only actually told a handful of people and some have passed it on, which is easy to do via email.

Day 43 (Sat 19 Aug)
Sat, 08/19/2006 - 23:33 — endc011
Fred is much the same today - alert and smiling, and getting a bit more feed each day.
Today he is up to 40mls which includes a thickener of sorts, to ensure it stays down in his stomach. He is also getting his nutrients via the TPN fluid which he gets administered via his Hickman line. He is about 6.7kg now, with most of the excess fluids having been wee'd out. He arms are quite skinny now at the top and you can feel his bones more. The doctors are happy with his weight and he is closely monitored so we are not unduly worried.

The renal doctors have said that his kidneys are working back at normal strength now, so they seem fixed - at least for the time being. A couple of weeks ago he had quite a few problems, and it looks like those have been overcome now. They will have a closer look on Monday but for other reasons and this would determine what chemo. he has next week.

Not much other news really about Fred, as he has been the same now for quite a few days. We are thankful for that.

Our time is filled each day by the following activities. As most days are the same, weekends come and go, so the only thing different about a weekend is there are less staff here.

We usually come in around 0900h. This can be the worst time, as it generally gives you a picture of what the day will bring. Over a week ago and before it could all be a bit worrying arriving to see Fred surrounded by a number of doctors discussing how sick he has been during the night and how another problem has arisen rapidly.

Once Fred is aware we are there I will normally go and get some breakfast from the hospital canteen. The food is good and cheap so I might have a bacon sandwich for 90p, tomatoes on toast or even a mini fry-up - which would cost me up to £1.30. Rachel will normally have some cereal or toast at home as she gets up first.

We change his nappies regularly, even more so now to prevent any nappy rash forming. We have decided to use Boots brand as the Pampers/Huggies might have irritated him a bit. They did at home in any case, and that's why we stuck with the reusables. It is shame we cannot use his own nappies here but it would get too complex for all involved and we would be lugging nappies around each day. The nappies have to be taken down to the sluice room where you write Fred's name on it in marker pen and leave it next to a collection of other childrens paper bowls, bed pans and other nappies. All are named and they are each individually weighed. This gives the nurses an idea as to how much fluid is coming out.

Occasionally we have to put some cotton wool into his nappy as this is later analysed for various things using a litmus test of sorts.

He has been having the barrier cream Cavilon recently which keeps the liquid out. This seems to be keeping him happy down below too. His skin is quite dry so he gets a moisturising cream rub as well, in all his nooks and crannies. It's amazing how much "grit" gets tucked in behind his pudgy knees.

He is due a bath shortly, so will be disconnected from the pump and can have an ordinary bath. We have to be careful to keep the stopped up end of his line free of water, but otherwise sits in the warm water happily. What little hair he has gets a wash too, then he is back in his bed with a warm towel. He is much more fragile than he was so we have to be careful now.

His feeds are generally by bottle at the moment, but he gets his supplement as well. If he does not take the feed we can pop the rest down his NG tube. Before doing this you need to check that the bottom of the tube is in the stomach and not the lungs or something, so we draw a bit of fluid back out of the NG tube and test it for acidity on the litmus paper. If OK, in the milk goes in slowly. He might also get some paracetamol down there too if needed, and then you finish the tube off with a little flush of saline to keep it clear.

We try and entertain him as much as possible. Sam,the playgirl, makes a point of getting him interested whenever she can.

Fred usually goes back to his bed around 1800h ish, where he will settle quite quickly. He will normally have a feed just before this. Once he is happy, we will head off up the road. Its only a 15 minute walk so once we are back we usually cook something up and watch TV until 2300h ish, and then off to bed. Both of us normally sleep right through until the morning without waking. Other than walking alot more, we are not that active most of the day and I was surprised at how tired you can get by sitting around. I suppose worrying at times might not help.

Over the next few days I am interested in finding out how many people are reading this 'blog thing. If you can just leave a comment it will give us some idea. Just a "hello" will do. You do not have to, but I am curious as is little Fred. I think I have only actually told a handful of people and some have passed it on, which is easy to do via email.I will repeat the above request after each 'blog 'til Tuesday I reckon. The statistics currently show 8200 "page views" since I started with Day 32 having 180 views or so. It might just be one person looking every few minutes of course?

Day 42 (Fri 18 Aug)
Fri, 08/18/2006 - 23:12 — endc011
Last night there was very heavy rain and thunderstorms overhead, which affected most of the south west by the sound of it. We had a power cut, which meant we got up a bit later than normal. Our walk to the hospital was through torrential rain without an umbrella between us. Therefore we arrived soaked and with very wet feet. At least we did not have to stand out in the rain like the patients from the BRI next door, as one of their alarms was sounding.
Fred was fast asleep on his bed and looked very happy. Apparently he had had too much milk in one of his feeds (30mls every three hours) during the night and sicked it back up again. I am not sure why he had 55mls+ given to him, but he seemed settled.

Rachel was giving him a cuddle and he started to smile alot. This continued on and off for most of the day, which was lovely to see. Some of the nurses witnessed it too, and they were really pleased as well. Fred has been a bit grumpy and demanding in the past so this was a treat for us all.

As he is so alert at the moment, we do not want him to get bored. We debate taking him down to the play room as it is quiet, but he has a line in at the moment and it can get a bit tricky. We get him a pushchair and plonk him in that. At least now he can see around and he is in a different position. He is quite chuffed with this and grins as best he can. We move him to the doorway of his room, so he can look down past the nurses station to the end of the ward. People can see him clearly and it means they stop and have a quick chat which he loves. He needs to have his brain stimulated as much as he can now because it will be easy for him to get bored. When he was at home he would be going off out and about, or in the car, or watching the world in the garden. No its a magnolia wall or ceiling tile. We move him again to watch the TV in the room and he is transfixed by the news.

The doctors come in and are pleased with his progress. They say he looks so much different now, and they normally just see him in his cot. He won't smile for Joanna though despite much cooing and encouragement. He watches them intently, remembering each of their faces for the future....

The physio, Hannah, comes in and is pleased with Fred's neck and general well being. She gives him some exercises to get his arms and legs moving which he seems to like. Hannah rolls up a long towel into a horseshoe so it comes down around one side, under the backs of his legs and back up the other side. This keeps his legs slightly elevated and together, and brings his arms and shoulders forward a bit. He then is on his back, positioned centrally but not flatted out all floppy. Again he appears to be comfortable and dozes with on eye open.

The rest of the day is quiet and Fred gets a new dummy. There have been some "new" ones found in his mouth which i do not think are his, but have been sterilised. the new ones are slightly larger but he does like them at first.

He gets some milk again regularly.

He will have some kidney tests on Monday, and this will decide what chemo he has at that time. He is off antibiotics now, and is just on TPN, which is a liquid feed that goes into his Hickman line. Not the same as a full belly. The tests he had yesterday are provisionally clear again, subject to some further results.

Hopefully the meeting next week will enable a few questions we have to be answered. Also we should know the results of the MRI and CT scan too. Have heard that before, so fingers crossed again. The EEG to his head were not really accurate as Fred was quite awake when they did it. This means the results are plotted as extreme spikes and troughs and mask the real activity. We are told that the EEG probably won't be done again as Fred has not had any recent seizure thankfully. I suppose it will depend on the CT and MRI outcome.

The weekend is approaching so staff levels drop on the ward. i suspect we will meet the weekend team of doctors who come around later. Most we have met now.

We will head back earlier today i think as Fred is settled and the washing and ironing needs to be addressed. No hanging it out on the line today.

Fred's last week has been good for him as well as us, as well as the bloggers and visitors. Have a good weekend - Tim Rachel and Freddie.

Day 41 (Thu 17 Aug)
Fri, 08/18/2006 - 01:00 — endc011
Today it is raining hard and is all rather gloomy out there.

When we get in Fred is awake with Kate, the ward sister, having just given him a wash, a new nappy and changed his top. He seems content at all this attention, and is due in theatre for 1330h or after. He is due to have some chemotherapy in the spine as previously mentioned as well a lumbar puncture to check for leaukaemic cells. He also has a bone marrow aspirate too. These tend to happen every two weeks as standard. He will be under general anaesthetic, so more consent forms to sign.

He has his milk from the bottle but cannot have any more until after his op. As he cuddled up to Rachel he actually gives a broad smile to us, which lasts a few seconds. Then it is back to a grimace, as the milk has run out again. It was lovely to see him smile as it seems to show that he is happier - more like before he was ill.

Les, Jane and the gang pop into see us whilst passing. It is good to see some different faces here. We have a chat about Fred's progress, and today he looks good. His hair has gone from all around the sides now, so he has a little "nest" of hair on the top. He has about ten eyelashes to each eye now unfortunately. Eyebrows still there though.

The Tissue Viability nurse comes in to see Freds backside and hand. Both are doing well now and she gives some advice on the best cream to use for the moment.

Les and Jane head off through the rain back to Devon, and then Neil arrives. It was great to see him too. Fred was on best behaviour, and stayed awake as best he could. Neil headed off back to Devon then in between the rain clouds.

After Neil, came Frances. Fred was getting ready for theatre and again was happy to entertain despite his busy schedule. Frances said how much better he looked since her last visit, when he was in intensive care. He was on a ventilator then, and looked very poorly. He looks more Fred like now she says, which is heartening to us.

Rachel takes Fred to theatre and decides to wait for him. Fred needs more nappies so Frances and I head out into the torrential rain without coats to get some lunch and nappies. Getting soaked is not a good idea so we buy two 75p umbrellas from the local tat shop. On coming out it is sunny so they are not used. We visit good old Wetherspoons, where I find I have "won a bottle of bubbly" and a "spirit and mixer" in a charity draw I entered a few weeks ago.
Coincidentally the nominated charity is CLIC and this means they get £100.00 of ticket sales. Staff are unsure what a 'bottle of bubbly' means and I expected a bottle of Cava or Asti. They present me with two bottles of champagne and ask me to choose. Now, I have to get the most expensive if I can, so choose the one with the orange label. The wine list subsequently shows this at £30.00 a bottle, so I am happy. Poor Frances thinks it is turning into an all day drinking session when I come back to our table with our drinks as well as a bottle of champagne. We quickly hide the bottle so the manager does not come out and take it back.
I also won some free bowling tickets on the Ward 34 draw earlier in the week, so I must be lucky. Lottery next.

When we come back Fred is not there, but he turns up a few minutes later. He is mighty grumpy, and is given some extra pain killers as they had to "grind around" a bit to get the bone marrow. Sounds nasty but Fred gets his dummy and seems OK.
The doctors too are pleased with Fred and Joanna gives him his fourth gold star! Fred is pleased at this too.

His next chemo will start again next week. The dosage will be dependent on how well his kidneys are working, so we do not know what that all entails.
We still have not had the results of the MRI and CT yet. The machine to compare the two is out of action, so this is a bit of a black cloud that hangs over us all at the moment.

I have read the comments and they are lovely to read, as well as amusing. Keep them coming please. Other people who read them enjoy them too. Have to create a "family tree" of who's who maybe.....

Anyway, that's caught up with the latest now the PC is working.

Day 40 (Wed 16 Aug)
Fri, 08/18/2006 - 00:49 — endc011
This 'blog is late as the PC in the hospital was not working today (Wednesday) and I tried to update the site from my mobile, but it did not work this time.
I was in Paignton most of today having caught the 1605h back from Bristol. Rachel has kept me informed of Freds activities.

Not much change really today. He has been by a number of staff and has been happy in himself. He has been taking his feed (15mls) well each three hours, and (touch wood) has not reacted to it. This means that his fluids going in by tube can be gradually reduced which is a great help to him.

The Renal Team are pleased with him also, so it seems his kidneys are improving, or at least becoming more efficient. He is having a rest this week of some of his normal treatments, which gives him a chance to catch up on his kip and general rest.

This resting means that he has, in the last four days or so, become very alert to what is going on around him. His arms and legs are more mobile now which will hopefully strengthen them.
The pressure mattress seems to soothe him, and it is a bit like an inflated pillow. Fred sinks into it a bit.

We head back up the road after Fred has started to doze off. I have brought back the last of the food from home in a heavy bag so struggle back up the hill. All the cupboards are bare now and only pickled jalapeno peppers remain in the 'fridge.

He seems to have developed a routine of being awake in the day, sleeping little occasionally, and then kipping down for the night once the room is darkened. This is good for him as well as the night staff. He is awoken for his feeds though.

Day 39 (Tue 15 Aug)
Wed, 08/16/2006 - 07:58 — endc011
After I posted the ‘blog yesterday I went back in to see Fred. Sarah had prepared his feed bottle for me. It contained 5mls of SMA Gold, which is Fred’s favourite tipple. It only just filled the teat but once he was positioned on my lap he started chomping away like mad. It is the first time in a week that he has had any food by mouth. Sadly it finished before he realised and cried every time I tried to take the bottle away from him. I managed to substitute the bottle for a dummy and after trying to wind him, I put him back into his bed on his side. He nodded off quickly sucking frantically, making quite a noise as he did so.

I have decided to come home today, so I get into the hospital at 0700h. Fred had had an uneventful night and is on his side all swaddled up. He has forgotten about his dummy and had obviously been given drugs orally as his chin is in a right sticky state. I whispered “morning Frederick” to him and his eyes open briefly. I don’t want to wake him really but he goes back to sleep.

The train is very quiet and cold today. Rachel and her mum will get back to the hospital mid-morning.

I speak to Rachel during the day and still no word on the CT and MRI scans. He had had 10mls of milk as well every three hours, which will increase to 20mls tomorrow. He seems to be as happy as he can be today. He also had another bath today which he enjoyed. He took delivery of a pressure mattress (from intensive care) which moves about when filled with air. He is not keen on this noisy device at first, but relaxes once his radio drowns out the background noise of it. Again he has a good day.

I met up with Wayne, Claire and Mark this evening and we decided to pay a return visit to the Embassy Tavern in Paignton. Yet another belt-busting meal that was really excellent. It is well worth a visit and is in Colin Road, just opposite to where the Tembani used to be.

A few people have asked me what made us think Freddie was ill enough to visit the doctor for a second time, especially as he only appeared a bit “off-colour” for a day or two at most.

Fred had been perfectly normal up until the Wednesday or Thursday when we noted that he was not finishing his feed properly. The weather over the previous weeks had been really hot and Fred had got a bit uncomfortable in his pram and Moses basket each time he was placed in it. He would nearly always be just in his nappy, but still be really clammy on his back. We were also giving him water between feeds to keep up his fluids so we thought he had just had enough and was just not hungry. Sometimes however he would finish a whole bottle. Because of this, we were not initially overly concerned about him.

Rachel was changing Fred’s nappy in the morning and noticed a small rash on his back about the size of a kidney bean. It was a cluster of tiny red dots and our initial thought he might have meningitis. I tried to see if they faded when pressed but they did not, so we checked his temperature which was normal. We thought we had better get the rash checked out so arranged an appointment with the doctor for later in the day.

However when Fred was put into his cot he vomited for the first time ever, although only the once. Obviously worried that something was clearly not right, we called the doctor again and they said to come in immediately.

We saw a doctor who examined Fred thoroughly, and he looked at the marks and felt that as it had been really hot, Fred may not like the heat or may have a bug. I explained that the red mark may have come from one of his dummy’s which got stuck under him for a couple of hours a day or two before. He suggested Calpol and off we went.

He generally stayed the same for the next few hours. However on Friday 7 July he was sick once again. We felt that there was something still not right, but had no idea what, and called the doctors surgery once more. The main worry was how to know whether he was taking enough fluids, as he had vomited twice and had slowed down on his feeding. With the weather so hot, a baby can dehydrate rapidly so they suggested he come in a couple of hours later.

We were seen by a different doctor this time who, looking back on it, she spent a longer time examining Fred, particularly his stomach and the glands in his neck. She noted the red mark and a bruise on his thigh. We also pointed out four tiny marks, which looked like insect bites on his leg, which we had discovered after a barbecue at a friends house on the previous Sunday. She was not sure what was up with him, but decided he should be referred to A and E at Torbay Hospital just for a check up and wrote a letter for them there.

We went across and were seen immediately. We got there about 1900h and he had numerous blood tests. We were then moved up to Louisa Carey ward later that evening where we were told we might have to spend the night there.

They changed over staff at 2200h and a few more tests were done. Near midnight the nurse got us to hold a mask over his nose where they gave him Ventolin which she explained would lower his potassium levels, which were high. Again Fred was perky and was happy taking the gas. No one yet had mentioned anything untoward.

Just before 0100h on the Saturday morning the nurse came in to say that the consultant would come in and see us shortly. No one had mentioned him before and this was the first indication to us that something was about to go wrong. He came in a few seconds later, followed by a variety of concerned looking staff who filed in behind him and he sat down with us.

He explained who he was and that he had been called in from home about Fred and that the hospital laboratory had found some “abnormalities” in his blood. He also said that they had been talking with “another hospital” about the test results and that our son was a “very very poorly little boy.” We were still none the wiser (but I now knew something horrible was coming our way). Rachel says she thought that at this point he might have been diagnosed with diabetes or something like that and I was still thinking along the lines of meningitis.

The consultant had a very apologetic manner about him and went on to say that sadly Fred had been diagnosed with a form of leukaemia and that he was very ill. He reminded me of the actor (Jack Shepherd) who played ‘Wycliffe’ with the same mannerisms, facial expressions and tone of voice.

I remember looking up and around and seeing all these blank faces (there were about five of them there) looking back at us. It was not pleasant for them either and Fred was in Rachel arms drifting in and out of sleep. I am not sure why they all had to come in.

We were totally taken aback by what he had to say and he went on for a while about what will happen in the immediate future. Whilst I recall everything he said, it seemed to fade away into the background as I registered the enormity of what had just been said and what was about to happen to us all, still with his colleagues looking awkwardly at us.

Looking back on the events - and what I know now - there were some very subtle indicators that something was wrong with him. However, Fred is an active baby and he gets moved and bumped around so it would be difficult to say it was obvious.

The mark on his back was actually small broken blood vessels just under the skin (petechiae), and because his clotting and blood characteristics were so deranged they were a very common indicator. The little red marks on his legs which we thought were insect bites were not, but were petechiea as well. His liver and spleen - you can feel these by examination - were detectably enlarged a few hours later and our local doctor might have felt this, although I do not know what was in her letter to Torbay hospital. He was simply just off-colour and generally not Fred to us. As he is so small we could not know whether he had any pains but I don’t think so.

The rest, they say, is history. The ambulance and retrieval team from Bristol arrived about 0330h and they spent about an hour transferring him on to their equipment. Fred was wheeled out through the main doors to an ambulance at around 0500h just as it was getting light. He was wide awake and looked back at us as he was pushed up the ramp and set off on his journey to Bristol. We would follow shortly afterwards just as the sun was rising.

We were told by a number of people and books before Fred was born that if you ever suspect your child is unwell in anyway and you are concerned, make sure you see the doctor. If you are not happy with what the doctor says keep pestering them, or go to the hospital instead. They go on to say that the best judge of whether a child is actually ill or not is the mother which is so true. You tend to get seen quicker if the child is referred in any case. A GP may not have much experience with some serious illnesses and we are grateful the doctor who saw Fred decided on getting a second opinion.

A bit of a long winded ‘blog today.