Day 195 (Sun 14 Jan)
Mon, 01/15/2007 - 03:16 — endc011
Fred has been his most active ever today, with him constantly being awake and trying to grab things.

Tubes, pots, stethoscopes etc are all the target of his interest, and can be a real pain. Even if he cannot see the item, he seems to know it is there and will bend himself backwards so his eyes bulge just to get at it. Even the NG tube is now having to be hidden or taped away as he is finding more ingenious ways to find it. Whilst he was naked and being changed, to prevent him tugging at his Hickman line I put a pair of socks on his hands which were way too big and taped them to his arms. This thwarted his attempts to tug the line from his chest but only served to infuriate him more. The "mits" did not come off until I saw fit.

It is nice to see, all this energy, but tiring when you are trying to get something done. The main problem is him pulling at his lines. If you take it out of one hand, the other hand instantly replaces it.

His weight is gradually increasing and his sickness seems to be slowing a bit. He still has a bit of an upset stomach in that he will have a series of poo's then stop. I have dealt with this by putting two nappies on, just as a precaution. Has worked so far.

I put the mat on the ground today and he enjoyed being down there. He did his first 360+ degree roll too. He got a bit dizzy and upset but rolled from his back, to his front, onto his back, and rolled over again almost to his stomach but hit his head on the floor as he went off the mat. He bawled for a bit but seemed pleased yet shocked.

With the door being open it meant he could lie there and all the passers by could come and play with him. He loved the attention today. The latest game he loves is to have a towl thrown over his head. 99 times out of 100 he will whip the towel back in one or two swift movments and appear surprised and laughing. However, occasionally he fails to find a way out after a few seconds and gets a bit weepy. He still manages to laugh and giggle loudly once he can see daylight. Sometimes, it is better to stop as his laughter gets too much and he forgets to breathe properly.

His latest toy is the stethoscope which has been hanging on the end of his bed for over six months now and came from intensive care, as did the bed.

He has fed well today too which is encouraging, though is still on his TPN whicch is what upsets his guts, but that is only my thoughts.

The weather is damp and overcast but the evenings seem to be getting lighter now. This usually is a good time of year as we look forward to the longer summer nights (and barbecues etc) though I guess this year will be different.

Hopefully in a months time he will BMT'd.

I bought some sushi today for lunch which was nice, and I saw that Tescos are now doing sushi with raw tuna. Will have to try that, but the fish should normally be really really fresh to work, and I am not sure how long they have been hanging around on the shelves. There is a sushi bar down the road which I keep meaning to try.

Day 194 (Sat 13 Jan)
Sun, 01/14/2007 - 00:20 — endc011
Last evening Fred seemed settled and did not vomit much thankfully. He continues to poo alot, but he does not seem to have an infection as they regularly take samples.

The upset stomach seemed to coincide with when the TPN was started and I wonder whether this has had any effect on his guts. The nappies need to be changed regularly as we do not want to start the nappy rash off again. It looked a bit pink the other day, but regular baths and bed baths seem to hold it off.

He gets a blood transfusion and some other stuff which is helpful to him. Generally he seems happy and normal.

I try and go to sleep early but Fred is a little restless and in the quiet of the night I can hear his nappy burbling, so I keep getting up to change him. At one stage it is every 30 minutes or more. I must be sleeping very lightly as during the night from 0200h onwards I seem to wake up at every commotion is his nappy. Most of the time it is only wind and a bit of poo. Fred of course sleeps soundly and does not really stir until I have to change him and his sleepsuit.

I wake this morning tired as usual and Fred is fully recharged. His TPN is disconnected and he is extra animated from his blood transfusion. We have hot buttered toast for breakfast and I tap a pot of Gentlemens Relish which usually follows me where ever I go.

He gets an early morning feed after his 0700h meds and seems to keep those all down. He has his nap and snores loudly.

At lunch he gets quite a few spoons of blueberry and apple milk cereal stuff which he likes. He must do, as his mouth opens especially for it.

There does not seem to be an indication of infection and the sign is taken back down again this morning, so the barrier nursing has come to an end for the moment. For today at least.....
I go into town whilst Rachel and Fred watch the darts semi-final.

There is a pile of washing to do this evening and I will get the backs packed soon for that and head back up the hill.

Rachel will be heading back home tomorrow I think so Fred and will be back for a boys night in. Fred can get quite wild at times.

We discuss moving to the BMT ward upstairs with one of the doctors, and will have a tour hopefully soon. We have been at this point twice so far - mid November and mid-December.

Hopefully the BMT will go ahead as planned on the 13 February. We do not know a great deal about BMTs at the moment, but it would appear that Fred may start experiencing problems a few days after the 13, so again prayers and crossed fingers please around that time. This will be beacuse all of his immune system will be out and the marrow killed off.

It will all be new to him, so we do not know how he will react to all the different drugs and effects they have on someone so tiny.

His weight has increased a bit and he is at 8.12kg today. We need him in as best a condition as possible in the run up to the transplant.

Day 193 (Fri 12 Jan)
Sat, 01/13/2007 - 18:25 — endc011
I filled the bags with Fred's laundered sleepsuits and headed back down to the hospital, just before it tipped down with rain.

He has been good overnight though he still has a bit of an upset tummy. With this news, our short-lived freedom is curtailed and the barrier-nursing restrictions go back on and the cubicle doors swings shut again....

Fred is fine and they have taken some samples off him, though we will not know what is what until Wednesday next week as I suppose the labs close for the weekend.

Rachel goes to meet a friend of hers for lunch and Fred and I stay in as it is cold outside again.
He spends most of the day awake rolling about and on to his front occasionally, and then bawling because he cannot right himself yet.

I watch Coronation Street with Fred and he eventaully falls asleep. He still fills his nappy whilst asleep and sleeps whilst I cahange him. A little pile of dirty nappies accumulate by the pedal bins, until I have to take them to the sluice room, which itself is smelling like bad brie.

Day 192 (Thu 11 jan)
Fri, 01/12/2007 - 03:03 — endc011
I slept through last nights high winds and the fence remained in position, but looked as if it would not last much longer.

I collected mum and dad and drove up the M5 in the buffetting winds and got here just before lunchtime.

We arrived to find Fred very jolly and happy, plus the barrier nursing had finished so we could open our doors once again. Which we did.

This also meant Fred could go down to the canteen with us and see what was happening outside. We had our lunch there and he seemed happy.

He is tolerating his feeds so far and has not been sick much in the last few days. Certainly not the same as before, and this has meant his weight has increased a little bit.

He has an eye lash on each lid now and no eye brows.

Most of the day he has been happy to watch the darts on the television and call out loudly. He received a present from Lily and Suzanne today, which was a bench and pegs he can hammer on. He will suck and chew the pieces first I think.

The rest of the day not much happened again. Mum and dad went home on the train and June later followed on the bus.

Day 191 (Wed 10 Jan)
Thu, 01/11/2007 - 08:23 — endc011
I awoke later than normal and had a big long bath, listening to the radio.

I rang Rachel and found out that Fred had had a good night and had been feeding on blueberry rice mix and he enjoyed that. His sickness to food seems to have abated somewhat, and with his TPN he has increased in weight to 8.08kg since his last weigh-in. That is good news, as a 200g weight gain is what he needs.

Not much else happened really and he is sleeping well, so must be contented.

I did lots today and met an old friend in the town who had seen Fred's story in the papers and she asked how he was getting on. I explained and gave her the 'blog details so she can keep up to date of his progress. Hopefully another 'blogger for the Comments section?

I went to the pub tonight for a drink with Hayley from work and met with Paul too. Had a good yap and headed back to update the 'blog.

Nothing else to tell really. I am back to Bristol tomorrow.

Day 190 (Tue 09 Jan)
Wed, 01/10/2007 - 06:58 — endc011
I woke yesterday at 0645h to realise that we had been there for six months exactly, almost to the hour. The weather was completely different of course as we arrived to brilliant sunshine and a heat wave. Half a year of being in the hospital - having left our "normal life" on hold with just a few minutes notice. We have been to the hospital every day since we came here, with the exception of just one day. It is just like going into work every day in a way.

Time flies....

Fred's TPN was delivered at 1800h last evening and was due to run for 12 hours. I spoke with Vanessa, the pharmacist , who explained it will give him 75% of his nutritional need without either of us doing anything further which is good. I thought it was supposed to be over 18 hours, but they decided on 12 hours as it would enable Fred to be free of his lines during the day and enable us to go out if we wished, with him.

We are reluctant to get him out at the moment, as the weather is poor, and he is neutropenic (see glossary). All of his counts are flat-bottom due to the recent chemotherapy.

The remaining 25% of feed will be given in 200mls of high calory milk (Infatrini), probably in four "doses" of 50mls plus his solid feeds over the 24 hours by us. If he starts to take more, his TPN can be adjusted but will be a bonus.

He slept well over night and did not wake until 0600h when he was disturbed by the staff disconnecting his TPN and flushing his lines. A dummy soothed him and he only woke when it dropped out. Each time I replaced it, he sighed and went back to sleep furiously sucking on it. Even in deep sleep his mouth will search for the dummy blindly.

He had his meds at 0700h and 1000h followed by a 50mls feed of milk. They have taken the thickener out this morning (Thixo - D), as the notes from the dietitian says "it seemed to have serve no purpose," which was a fair comment.

Rachel and her mum, June, arrived about 1045h so I took the car back to the house to get some stuff and then headed back through the mist and gloom. On the way I saw my brother Duncan driving the other way again, whilst on the 'phone to each other.

I later spoke with Rachel and she said that Fred took his solids happily as well as another 50ml of feed. He fell asleep and they popped into town to get some nappies and some lunch. When they got back he was exactly as he was before, snoring and chewing on his dummy.

He was sick only a little later, so has tolerated his feed so far, and fingers crossed he will continue to do so.

I decided that tonight I would cook some meals up to freeze so stews, cottage pies and meat balls in spicy tomato sauce were created and put into foil dishes for freezing. At the moment they are cooling in the car port ready for their trip to the freezer.

I have also today chased the Daily Express and Western Daily Press (who had not replied to my letters of the 12 December) about their inaccurate articles relating to Frederick, which some of you may have read on the 11 December. A solicitor from one of them acknowledged receipt of my email advising they had not receive my letter of complaint but will look into it "urgently". Fair enough.

The back garden fence is rather wobbly at the moment and I suspect it will fail in the next few days, though tomorrow will re-strengthen it with cable ties to the post I fixed up last time I was down.

I shall go and collect the foil food trays now, as the local cat community may well be sensing free dinner is at our house tonight. The trays are covered mind.

Day 189 (Mon 08 Jan)
Tue, 01/09/2007 - 01:27 — endc011
Fred had his NG feed started at about 0200h this morning and it continued until 0600h. He would have somewhere in the region of 125ml in that time. As expected he yucked most of it up again by 0645h, but then he relaxed to catch up on his nap. I did too after the obligatory clear up.

The doctors come around mid-morning and we discuss his nutrition intake which is very low compared to what he should be getting, and retaining. He is weighed again and is now at 7.8kg, a 100g loss since yesterday.

He will now have TPN (see glossary) via his line over 18 hours, and this will account for 75% of his nutrition. The remaining 25% will be NG tube as we are doing now but the volume can be spread over the 24 hours if we wish. That way his stomach will continue to work, and hopefully he can be weaned off the TPN gradually once he gets himself sorted.

Otherwise he seems fine today and has sat in his buggy to only fall asleep reading his fabric books.

I manage to get into town to send some post off and avoid the rain drops.

We have also connected a bile bag to his NG tube so that if there is any pressure on his stomach, it can leech out into the bag. Might work, might not - but is worth a try just to see if it helps him in some way.

Have done the 'blog earlier tonight as hope to get an early night if his TPN has arrived.

Day 188 (Sun 07 Jan)
Mon, 01/08/2007 - 22:33 — endc011
Fred continues to not tolerate his feed, and now is down to just 200ml in 24 hours, which is a 1/5th of his minimum intake. He is not interested in the bottle and when the feed is given by his NG tube, he gets distressed after 50ml or so.

If he does not sick it up then, usually a couple of hours later he will get stomach cramps for 15 minutes or so, and eventually it will come out. However, all that he has taken is then lost so I do not know how much he has taken in.

His weight has dropped further to 7.9kg.

They are trying various combinations but he simply does not want to hold his feed for some reason.

This goes on most of the day, with the only highlights being him happy after he is sick, and the eye drops every two hours.

We decide to go back to giving him some feed over night via the pump through his NG tube once again. He will get four hours worth at 33ml an hour, so will have 120ml or so slowly.
He has been sick quite a few times today and I worry whether it is doing his stomach any good with all this retching.

Anyway, hopefully he will start to sort himself soon as we need him to be heavier when he has his bone marrow transplant.

Rachel will be back tomorrow, and hopefully she will enjoy the break away from the hospital. I am due back on Tuesday all being well.

Day 187 (Sat 06 Jan)
Sun, 01/07/2007 - 02:23 — endc011
Fred slept soundly through the night and did not stir. he had his last feed last evening at about 2000h and his next feed this morning at 0800h. He seemed happy and hopefully this might have rested his gut a bit.

They still think it is an infection that is holding on and hopefully this is the case, even if it is just an explanation.

He has only had a little of his normal amount today and has still vomited after the recent feeds. Again he becomes distressed and in pain, before yucking up several times. Once out, he beams from ear to ear whilst we wash him down. Normally he will then nod off for a quick nap after that.

We could have gone out again today, but it is raining hard once again and we do not want him to get all damp. He has a bit of a cough though this only happens once or twice a day.
Nothing much happens today really, with us just stuck in the room. Today saw the start of the darts competition which is one of Rachel's favourites. Same old faces mainly but a few new ones are there.

Rachel is developing a cold too, but she will stay here tonight in the hospital, whilst I am up at the house. Not sure what to eat tonight as it might be fish and chips for me I think. Have not had them for some time and the chippy on the corner is good. No kebabs for a night or two I think.

Day 186 (Fri 05 Jan)
Sat, 01/06/2007 - 23:14 — endc011
Fred continues to not tolerate his feed and is sick overnight a few times. His feed has been going in overnight at a slow rate, but after fours hours or so, he gets a grumbly stomach pain and ejects what he has had.

This means new sleepsuit, blankets, and bedding each time. He has a habit of waiting until he is cleaned up before sicking again.

I do not get much sleep because of this, eventually nodding off from about 0700h onwards.
Rachel comes in to wake me and the dietitian shortly aftrwards arrives. We chat about the problem and Fred is to continue with the Infatrini, but with a thickener - Thixo D which he has had before. Once in his stomach it thickens and hopefully will not come out.

He is still having a few anti-sickness drugs but it is difficult to tell if they are working or not. The worry is that he will lose weight and not be in fine form for his bone marrow transplant.
The doctors have suggested a provisional date of the 13 February, but we will know more as the date approaches. We do not want getting ill again beforehand.

Fred can go out today, but it is raining and not much to see. I pop out to get some food for Rachel as she is staying tonight and tomorrow night.

Fred seems very well at the moment and jolly.