Day 98 (Fri 13 Oct)

Sat, 10/14/2006 - 00:04 — endc011
Last night Fred was rather good and did not cause trouble on the ward. He hopped from his bed to the pram and back again.


Once he was in bed proper, he fell asleep very quickly and did not wake until the early hours of the morning. I did try to wake him and give him his feed, though he was not having any of it. I tried his NG tube but I could not get any stomach acid back when i checked it so I waited until the morning.


With Fred having all of these fluids, he is putting on weight a bit and must not have an appetite.
I watch TV whilst he drifts in and out of sleep, though he does roll over to watch Ladettes to Ladies.


In the early hours I spy him quietly looking about. He has not seen me because I am on the bed on the floor below him, but I can see him through the sides of the cot. I call out his name and he is startled at first. He then looks down and sees me on the floor, effectively. He squints through the gloom and breaks out into a big grin and chuckle. This is his cue for waking up properly and so I get up too.


He has his early morning obs and meds and by 0700h I have been up for ages and have fed him again.


He is still on various fluids but by the end of the day he is off them. He is due a blood transfusion later today and that should be here by 1800h or so.
The girl next door who is about 12 has just come back from theatre and so is a bit a groggy. Freds nurse asks if Fred can pop in as it would cheer her up. He gets out of bed and into his pram. He makes his way next door and entertains her for 15 minutes or so. This could be a new thing for Fred - ward rounds to entertain.


He seems very good today, but from 1630h onwards we notice his temperature has crept up to 37.9c. We had also had noticed that where his Hickman line enters the chest it was a little redder than normal. His nurse swabbed the area and sent it off to be checked but this could be a source of infection. If it was due to the faffing around with the dressings in theatre none of us will be best pleased.


They will monitor the temperature but if he gets above 38c, then our planned weekend away at the flat with Fred will be scuppered once again. It also would jeopardise his next high dose chemotherapy planned for Monday. Anyway, we shall have to wait and see. Today is Friday the 13th, and so being superstitious, I am perturbed.


In any case, have a good weekend.

Day 97 (Thu 12 Oct)

Fri, 10/13/2006 - 03:17 — endc011
Fred has been much more settled over the last day or two, though is still having the rescue agent through his line, possibly for the next twelve hours or.
Rachel tells me that his fluid balance is now "negative" which i think is good. He is also on the diuretics to deal with the excess to.


I came back today and managed to see June on the bus before she left.
As Fred is hospital bound not much to report again. When I came in to this room this afternoon he had been crying but soon perked up. His full nappy was changed and he managed to fall asleep sucking madly on his dummy.


Rachel and I went back to the flat at about 1845h and when I returned an hour or so later he appeared to be in the same position, so he must be tired.


I am staying overnight in the hospital and this will give Rachel a rest tonight. It is difficult to get a good nights sleep here as so many things are going on around you.


Anyway, must go and feed Fred so that he has another at midnight if he wants it.

Day 96 (Wed 11 Oct)

Thu, 10/12/2006 - 01:27 — endc011
I ring Rachel this morning to check how little Fred is today, after yesterdays experience.
He is much better in himself and is laughing and giggling, and waving his legs about. He seems to be totally different to what he was a few hours earlier.


He is still plumbed in with a hydration fluid, which means that he is weeing alot more than normal. They are checking his urine each time there is a nappy change to monitor his kidney function. So far it has been OK.


With all the fluid going in, there has to be a careful balance with what comes out. This is where things went a bit haywire the last time. He is "positive" at the moment in that he is retaining fluid gradually. On Monday he weighed 7.29kg and yesterday he was 7.45kg. Today he is 7.59kg, so this will be monitored carefully. he may need another lot of diuretics, but he seems to be doing the best he can.


He is feeding OK as well today and all in all he seems to be cheerful.
I managed to reduce our monthly water bill from £70.00+ a month down to £10, and get a £150.00 rebate so that is good.


At the moment not much else has been happening and I am heading back tomorrow, and will get back in time to wave June off at the station.


I will put some new photographs on later, so have a look at the gallery on the 12 October.

Day 95 (Tue 10 Oct)

Wed, 10/11/2006 - 05:01 — endc011
After my last 'blog entry last night Fred settled quite well and fell asleep after a bit of coaxing. I think he had a bit of trapped wind as he was a bit like he was when he suffered from colic when he was little. That passed, and he nodded off, but then I decided he needed a top up of milk at midnight.


I stayed awake and must have got off to sleep about two or three in the morning. There was one poor child who was shouting and screaming out most of the night which kept waking me, though Fred snored through it. Every now and then the nurse comes in to check his temperature, and check his blood pressure, doing his obs. I am so tired I rely on them to ensure he is warm enough and she knows this. He is used to that now and will sleep through it, but it wakes me. I will have a dopey chat with the nurse whilst she does her bit before she scuttles off to another. Otherwise I have the World Service playing on the radio which actually probably keeps me awake. Should North Korea start launching missiles at least I will know first. As well as Frederick of course.


From 0800h today he needs to be nil by mouth, and so a midnight feed could hopefully mean he will sleep through the night, wake at 0500h or a bit later, and have another 175ml feed just before he had to be starved. He also needed his oral meds by his NG tube before that time, so I did not want to overload his belly. He took that sleepily and dropped off. I tried to wind him in the ski-jump position, and he glances at me sideways with a rather sad expression on his face, knowing that he has no wind to burp, but I continue anyway trying to expel any badness from his tum.


At about 0400h they tell me the lab has come back with his blood results which were taken by the Hickman line earlier. As expected, the labs detected the chemo drugs or saline flush and therefore were rejected. This means he will need to have another sample taken early this morning in order for him to catch his late AM slot in theatre. One of the doctors from A and E will come up and do the deed - this time the target will be the top of his foot.


I get some more sleep but wake at 0600h and get him ready for a feed and his 0700h meds. They anaesthetise his foot in preparation an hour beforehand and I am assured he will not feel a thing.


Fred is wide awake by then, and is ready for the day ahead, unaware he is going to theatre of course, and neither aware one of the SHO's from two floors below is on their way to meet him armed with a tray, some wipes and a few butterfly needles and cannulas.


Contrary to what I told Fred he does feel the needle going in the top of his foot and is not pleased one bit. His face goes red as a rooster. Two attempts at getting the blood result in the amount needed and that is portered across to the BRI for testing. A short while later and the result is good so he is still on the theatre list. Hopefully no emergency cases will knock him off after all this hassle.


He gets an extra cuddle from me and reclines happily after that, playing with his hospital activity gym vigorously.


I head over to the canteen for some breakfast whilst the student nurse Hannah looks after him. He is content and manages a few weak smiles, though strangely is not quite "Fred."
At 1000h Rachel arrives and we swap over. I head home and have left Rach a briefing note of what is planned for the day, and what is outstanding. Her mum June is with her for the next three days which is good for them all.


It does not take me long to get back, and I visit a couple of friends as well as my mum and dad. It is good to have a cup of tea and some lunch, and read the papers.


I later speak with Rachel as Fred has been to theatre for his LP, IT and BMA. Unfortunately he is not too well on his return and is sobbing. He obviously had a bit of a painful time down there and is sick. One of the things with the chemo is an excess of mucous which can cause him to gag a bit. Plus the procedures are likely to give him a belting headache, though he gets various painkillers and anti-sickness drugs to help him.


I met with his anaesthetist at 0730h and we agreed to use his lines for the anaesthetic rather than gas, as this had previously made him feel extra grotty. We also had asked Theatre for the Hickman line dressing to be changed whilst he is under anaesthetic which they did, but not as it should have been, so that is replaced on the ward much to his annoyance and discomfort. His NG tube was also replaced in theatre but there was some doubt as to whether it was correctly placed, so he had to have that re-inserted down his nose and throat on the ward, which again distressed him. By then he was mighty hungry too.


I would have thought his hands and foot must have been throbbing as the bruises were just showing when I left.


All in all he has had a bad day, and must be feeling awful and down. I only hope that he is feeling better by now, as I have not been able to speak with Rachel at the time of this 'blog. No news is good news?


I meet up with Dave, Jo and James tonight and we have a good chat. The last time we had a drink together was in June at a party at our house where Fred was passed around to every one and that was the start of the hot summer. Seems a long long time ago now. The evenings are now dark and outside it is thundering, feeling very autumnal or winter-like.


Fred will also have some oral chemo over the next 15 days, plus some other different ones, and his big dose episode today will be repeated again shortly. Hopefully the clotting tests will be done before hand to minimise his misery.


He will be given a "rescue" fluid I think tomorrow, where it reverses the chemo given today down to a manageable level, though I am not sure how that works yet.
If there are thunder storms in Bristol I hope Fred is not disturbed by them. He has slept through them previously. I am not a fan of such storms so will hide under the bed clothes with the World Service playing loudly tonight.


Just as I post this Rachel sends me a text from the hospital to say he is dozing. Once he is asleep he will be away from interference from others. I do not know whether babies dream, but hopefully if he does, they are nice ones for him.

Day 94 (Mon 09 Oct)

Tue, 10/10/2006 - 04:55 — endc011
Fred behaved himself last night and was the star attraction whilst he was awake. Rachel also had a good nights sleep I believe, and when I came in he was already hooked up to the pumps.
They started the hydration fluid at 0500h and this continued until 12 noon where they swapped it all for his high does chemotherapy. This will go in over a 24 hour period as I have previously said, and immediately following that he will go to theatre, for more chemotherapy, plus a lumbar puncture and bone marrow aspirate.


Unfortunately, for some reason, they did not take a blood sample before they connected the chemo, although this is required to check how is clotting is working for tomorrows procedure in theatre. If it is not done today, there will not be enough time tomorrow, and so he will miss his slot and therefore his IT chemotherapy. The only way it can be done is to take it from a vein. The lines are already in use for his intravenous drugs so they cannot really be used. I consent to them doing it via a vein as there is not much choice, and Fred will forget pretty quickly.


Sadly it takes a few attempts just to get 1ml of blood and both hands are needle pricked. Poor angry Fred. The sample goes off for analysis.


Fred has been really well today and has had apple and apricot mush, and then later had some strawberry fromage frais. He was not sure of the latter but soon tucked in to a few spoonfuls. That was his supper really so I did not overdo the solids. We watch Coronation Street together and he seems relaxed.


Later I settle him into his bed. No gro-bag tonight as the lines have to come out somewhere, and having them near his hands is not a good idea.


At around 2130h Jo says to me that the sample we took earlier in the day had clotted by the time it had got the lab, and that they needed to repeat the procedure. Sounds like clotting is good, but they need to test it properly.


So we start again. Fred does not give blood easily and so he has two attempts in each hand plus, a cannula, but this does not work. Jo looks at his feet for a vein, but it is decided to stop his chemotherapy for a minute or two. They use the line and take blood from there which is easier. There is a risk that the blood will have some drug in it from the line, but this is flushed through thoroughly. Out comes the blood and is whisked over to the labs for testing.


If it comes back contaminated with the drugs, then it will the foot I'm afraid. Probably around midnight too.


The good thing is Fred can suddenly start smiling and laughing during the procedures so he must not be toooo grumpy.


Anyway Fred was asleep just now.


I went across to a little sushi bar this evening and had some. Very nice plus had some Tom Ka Chicken soup. Hot, coconut broth with all sorts of twigs in. That must be the lemongrass.
Anyway I need to go back and see what Fred is up to. None of the children are asleep yet and so the nurses are run a bit ragged at the moment.

Day 93 (Sun 08 Oct)

Mon, 10/09/2006 - 03:29 — endc011
Yesterday went well in that Fred could stay out until this morning. Given that we could leave the city behind we ventured as far as Cribbs Causeway.


We have only been there once before, and I remember why now. It was a beastly experience that we shall try and avoid like the plague another time. Those of you who have been will recall a myriad of expensive clone retailers replicating a High Street in Anytown, and American style franchise food shops selling nasty stuff at inflated prices. A normal sized muffin for £1.89 plus a coffee for the same price. Me being a skinflint compares this to Wetherspoons (£1.25 for the two) and probably from the same factory.


However, being the hypocrite we went to Asda and bought various bits and bobs all at deflated prices. Still have not found a butcher in Bristol.


Fred enjoyed the trip as he could look about at new things and we bought him some mini fromage frais which he now loves. better than baby rice, he reckons.


The haggis went down well, and Fred had a good day. He got very tired and grizzly at 2000h, and tried valiantly to stay up with us, but fell asleep between the living room and his bed.
We all sat and listened to the Archers this morning and had some breakfast. I have not heard this for about four months now and used to catch up on broadband. It was nice to have a leisurely few hours together, something which we have not done for a long while. And with it being a weekend made it seem even more lazy. I just needed the papers that time of the day but could not be bothered to walk to the shops.


He had to pop in today for some bloods and came out again. Due to the timing there was not much to do, but we did go and look for the Book Barn just past Temple Meads. This is the second time we have gone looking for it and found the building, although it was closed on Sundays. This was despite their advert stating it was open seven days a week, 9 to 5.
We then decided to head over to Clifton Downs which was really nice. If you have not been there it is worth a passing visit. Basically it is a large green open space, a bit like a plateau that looks over and across to the Clifton Suspension Bridge to the south and to the docks to the north. You get a good view of the A4 Portway down below which is the main road that follows the river, under the suspension bridge. It was rather windy up there, but Fred enjoyed the fresh air.


We headed back for something to eat and then at 2000h we came back into the hospital. Fred's bed was all made, and we plopped him in there as he was getting tired again.


Tomorrow morning at 0600h will see the start of the first bit of chemotherapy. I think it is planned to run over 24 hours so he will not be too mobile tomorrow but previously he could be moved about if necessary. Hopefully he will be up to his solids and milk.


he has been very jolly today and easily laughs. He spent a lot of time exploring my face with his soggy hands. He was amazingly gentle most of the time, intently tracing my ears and nose with his saliva-clad hands. Then he was scratch and twist an eyelid just to see if I was paying attention. However much it hurt, Fred enjoyed it immensely, as did I.


Anyway, better troop back home now as it is very dark outside. The summer has truly gone now and it won't be long before the clocks go forward.

Day 92 (Sat 07 Oct)

Sat, 10/07/2006 - 18:17 — endc011
Fred stayed with us last night and had a right old time on his fleecey play mat, with multi-gym. He combined this with watching television quite well.


He managed to polish off the remainder of his cheesy vegetables happily. It is going in now, being munched around and then not coming out again. He is also now on 175ml of milk as well.
Over night he nice and quiet and no repeat of last weeks antics. The gro-bag is good in that he cannot poke the blanket off with his feet, and so seems happy to be in it. The room is colder than it was, though the heating is not yet on. He wakes at about 0345h for a feed and settles quickly after that. I can hear him fidgeting in there for a bit, but thankfully no singing practice.
This morning we have to take him into the ward for his bloods etc, and we can go again. We see he does not have a nurse today, which either hopefully means they will kick him out promptly, or that we will languish all day waiting for an opportunity for someone to deal with him. It is bright and sunny today and one of the last chances to take him out when he is not being affected by his chemotherapy.


I am doing this much earlier than normal - 1115h - in the vain hope that we will be going again soon.


The house is two thirds full again, with some of the old faces coming back for further treatment. They tend to be simple cases or older children that can be treated locally to them. Hopefully little Fred will one day be able to "move out."


I need to get some more potatoes and swede, as tonight I am cooking haggis. Another relic from the 'fridge at home. I have some snails in there, not many, but i think they are due a visit to Bristol. These snails are dead and in garlic butter, so are not an infestation - like the psochids I had to deal with the other day.


It will be a visit to the shops today in this weather I hope, unless they are all closed by the time we come out of here.


If we have to come back for any reason, no doubt I will update the 'blog again.

Day 91 (Fri 06 Oct)

Fri, 10/06/2006 - 22:22 — endc011
Another good night and without a temperature means that Fred is allowed out today. He came back in last Saturday and so stayed in for nearly a week.


The doctors review his blood results and say he can be away for the weekend but he needs to come in each morning for his bloods, so no long journeys for us. They had suggested a week ago that we might be able to go home for the weekend this weekend, but sadly not to be.


His neutrophils are up (good) and his infection marker is down (also good) so he can have the time off. On Monday at 0600h he will start his 24 hour high dose chemotherapy intra-venously. There is some preparation beforehand, so he will stay in on Sunday night. Then on Tuesday he will have his LP, BMA and IT chemotherapy in the afternoon. Again it will be in theatre and so far he has not had problems with those procedures.


We went out today to the library to return my Enid Blyton books, and then had some lunch in town. Spot of shopping in Boots for some throw away nappies, plus some wipes. He will be back in his power pants soon - the cotton reusables which are his favourite.


We load up with milk and stuff, plus some bottled solid food for him, which the hospital provide. Today he had cheesy vegetables which he liked. He chomps on it a bit more now and it disappears quickly. He has a pot of chocolate pudding which should be interesting for him, as well as us.


It is 1530h so we are ready to head back in the rain. Hopefully Fred will not get another infection this weekend.


We have missed the Juice Run here today, but it has been quiet. Might head to Weston over the weekend or at least do some proper shopping somewhere.


I checked the statistics for the 'blog and there have been 21,550 "page views" so far since I started it. Have a good weekend.

Day 90 (Thu 05 Oct)

Fri, 10/06/2006 - 02:52 — endc011
When I was printing off the last weeks 'blog I noticed that I had repeated a day, so we have gone from Day 88 to 90 so as to correct it.


Fred was well behaved overnight and his temperature has remained at around the 36/37c area which is normal for him.


It is raining quite hard in Bristol and so Fred is a bit housebound in any case today. He is still receiving antibiotics and so he cannot go back to the flat just yet. Otherwise he seems fine to everyone and is as entertaining as ever.


Last night I met up with Wayne and had a chat which was good. Paul appeared and we caught up on more gossip.


Today I nearly did all I wanted to. That was until I encountered the psochids in the bin. There was thousands of the little buggers sitting on the kitchen bin lid. I tried to kill them off with a spray, but took it outside in the end and poured boiling water of them. I think I threw a half used pack of flour out last time as well as some rolled oats. These things are the same as booklice, and like the taste of flour and glue. I checked all our cupboards and jars but there was not anything hiding amongst them. Hopefully they will have all gone by the time I next check.


The drive was uneventful but rather wet. No accidents this time, and I did not take me long.
Fred's counts are improving and he is clearing up the remains of his infection. His neutrophils are increasing by themselves and all seems OK.


As he cannot stay with us overnight, we take him back to the flat whilst we get something to eat. Before we his temperature has increased to 37.8c which is not a good sign. However, it looked like he was over-dressed and over heated a bit. Once we got him home he was 36.1c and has remained at that since we returned.


He gets put into his gro-bag and looks rather comfortable. He gets his feed, plus I give him his meds.


Time for me to head back, as the night staff come on. Fred is pleased with his new toy that James gave him - it has been named "cobweb."


We hope that the infection markers in Fred's blood will allow him back with us, as he starts his chemotherapy next week apparently.

Day 88 (Wed 04 Oct)

Thu, 10/05/2006 - 00:48 — endc011
Fred has had a good night I am told and his temperature has remained normal for nearly 48 hours. This tends to be the target period of time before they assess whether he is fit to go out again into the germ ridden world.


I gather his neutrophils are increasing and so does his ability to fight infections. There are numerous sources of infection which previously was probably his nappy rash. That is liberally covered with cream and has not been a recent problem. Fred's current habit is to stuff both hands in his mouth plus anything else he can get his hands on.


Other sources of infection are his Hickman line site, which I suppose is an infection waiting to happen. Whilst it is dressed, it is a tube from outside going inside. The clear plastic dressing allows close monitoring of it, but sometimes when he is neutropenic, there would be any outward signs of infection, because pus and inflammation come from the white blood cells - which he does not have of course.....


We constantly spiri-gel our hands but with dummies dropping out and getting jumbled up with old ones, plus sneezes and coughs from passers by, an infection is inevitable.


He has been happy today and rather active I hear. It is time for warmer clothes too, both for Rach and Fred. I will still just wear a t-shirt though. I am bringing down a few jumpers, plus the gro-bag for Fred. Hats will be brought out too. Fred's collection of hats is becoming legendary in the hospital.


I took my car for an MOT today and it failed. I think it was the same point last year that was raised as an "advisory" but I get it fixed in the end. I am lent a courtesy car which enables me to visit one of Fred's little friends - James. He bought him a spider that vibrates, and which can be clipped to things. He loves all his toys at the moment, with his bed full of clutter sometimes. James is about six weeks younger than Fred, but is now doing the things Fred should be doing. He has succeeded in rolling over, unlike Fred who needs to just get a bit more momentum to complete the manoeuvre. Trouble is Fred has recently been in the bed trying to roll, plus he has his lines getting in the way.


Whilst collecting my car I popped across to the fire station to see Dave who was working. Nice to have a chat and a cup of tea plus catch up on all the gossip too.


I collect my car and the MOT certificate and head back. I have taken the car off the road now which should save a few pounds on fuel and excise license. Gave it a wash and vacuum though this morning.


Hopefully Fred's temperature will remain constant, which to me might mean that he can come back to the flat tomorrow night. However, I won't expect it will be for a day or two in any case, knowing how things work.