Day 205 (Wed 25 Jan)
Thu, 01/25/2007 - 06:53 — endc011
Yesterday I caught up with the 'blog as best I could, though as I am returning to Bristol tomorrow morning, I do not know whether I will be able to post further entries due to Fred's, and our, confinement.
I rang Rachel today but could not get a reply from his room. I learnt from one of the nurses that Fred has been moved to another room, as his is now being redecorated. He was in cubicle 5, but is now in cubicle 2. Still a room with ensuite facilites but this time is much brighter and with a view of the traffic junction and Upper Maudlin Street which sounds exciting. I doubt whether he will go back to 5 which has been his home for 6 1/2 half months, which is sad in a way.
Rachel cleared the room this morning and found all my sweet and crisp papers under the permanently folded own bed I think....
He was called to theatre this morning to have his PICC line inserted into his groin and that sounded successful.
He encountered a slight temperature during the morning though it did not progress to much I hear. He came back grumpy and unsettled but seemed OK. The line was working when I spoke to her.
His blood counts remain low still and he has started getting a sore bum once again, and so the staff were going to have a close look, so as to avoid further infection.
He is also to have a 5ml feed again, every two hours, so that he can keep his digestive system ticking over and address his probable hunger pangs. His mouth has become very dry at times, and when we wet his dummy with cool sterilised water he relishes this. We also have sponge lollipops soaked in the water to wipe the insides of his mouth and he sucks on those enthusiastically - getting a bit of water down his dry throat.
Nothing else to report really and I will head back tomorrow hoping to find him well and content.
Day 204 (Tue 24 Jan)
Wed, 01/24/2007 - 21:14 — endc011
We are still in custody due to Fred being Norwalk positive (norovirus) and so my access to the communal places has been restricted.
Thankfully, Claire is happy to post the short ‘blogs I send her by ‘phone – thank you Claire.
Certainly the last few days, looking back, have been rather difficult for us all, especially little Fred who has suffered the most obviously.
He has had a number of issues which have all come together which made diagnosis a bit more difficult I think.
You will recall from earlier blogs that he had not been tolerating his food at all, and his intake was down to about 50ml of milk, with that not staying down. He also had loose poos which meant he was not retaining food or liquids and was liable to dehydrate rapidly, especially at his size.
They started him on a liquid feed – TPN – and this helped his stomach to rest we felt. Around that time he started to get stomach cramps and become quite unsettled due to it, and this gradually increased until he was in agony on a regular basis.
They did a number of x rays and scans which showed an inflamed stomach, and which led to them thinking it was a case of mucusitis. This is normal with some chemotherapy treatments, and Fred has had ulcers to the mouth before, though they can spread to the throat and stomach. I suppose it attacks anything with a mucus membrane.
From that it transpires that one of the bugs - enterobacter – that normally lives happily in the gut escaped into the blood stream through the thinned stomach walls and started to cause him problems. I think that was infection 1.
Combined with that I noticed that his worst bouts of cramps were at night, coinciding with the overnight TPN which goes into him via his Hickman line. These lines are prone to infection because they are something man made on the outside of the body going through a hole in the skin into the body, but also are an ideal place for certain bugs to hide in the plastic tube, or stick themselves to it.
When the line is used, the bugs are flushed in large quantities into the blood stream, hence a rapid adverse reaction that we saw. I suspect that during the other times small amounts of drugs were given during the day, he had cramps some 30 minutes after the line was used, but we did not relate the two.
Infection 2 manifested itself by him having high temperatures which were controlled by drugs and all seemed well. However they started to increase in frequency and range too.
On the Friday night he seemed OK when his obs were done by the nurse, but within a few minutes he had gone very quiet and had drawn himself into the foetal position. He had gone a dreadful grey colour and his breathing was shallow but rapid. His arms and legs which were earlier as warm as toast were now ice cold, and the skin had a mottled appearance similar to our skin when you are very cold. All this happened in a matter of minutes.
When a temperature like the ones he was having are brewing, the blood makes it way to the core of the body to protect the vital organs I suppose, leaving peripherals cold.
I called the nurse and it was apparent he had deteriorated rapidly and so there was a lot of fuss around him. His temperature at the start was a respectable 37.5 but within 30 minutes he had climbed to 41c, which is about 106f. Whilst one should not become obsessed with taking temperatures I took it each minute and saw it rise in 0.1c increments every minute, which was more worrying for Rachel and I. His pulse also rises whilst you watch the monitor, once up to 225 BPM though mostly around the 200 mark.
He would get a fluid bolus and paracetamol, which normally brought it down. The fluid pushes the blood and stuff back out to the arms and legs and they can be warm again in a matter of minutes. As I have said before this medicine stuff is quite clever really.
However on Friday night they called for the on-call doctors and they looked at him, which by then he looked awful again. The doctor explained that Fred was currently a very poorly little lad (have heard that before….) and there was a chance he might be transferred to the intensive care unit.
I called Rachel just as the mobile x –ray and radiographer had left and she was down a short while later, at about 0600h.
He seemed to settle in the day, but still swung between high and low temperatures.
On Saturday night he started high temps again, this time it was every two hours or so. The doctors said Fred was doing well to try and control the high body temperature by heavier breathing and a fast pulse, but it was incredibly tiring for him and he could not sustain that sort of effort continually. His oxygen saturation in his blood has nearly always been 100%, but it did start to drift down a bit, which was a cause for concern. The body does all this to keep cool, and yet the blood pressure stays normal whilst it can. If things get too unbalanced then that’s when the problems hit the patient.
It was obvious that something needed to be done as Fred was deteriorating and whilst the drugs could help him, they did not seem to be attacking the bug that was causing him these infections.
It was decided that the likely candidate for the infections was a bug in his Hickman line. Therefore, it needed to come out urgently, and Fred was taken to theatre at 2130h on the Saturday – Day 201.
He went down all hunched up and shivering (or rigorising) as he does in such situations. In the bright lights of the corridors as we made our way to theatre he looked even worse now.
He disappeared behind the swing doors and we came back to the room. Jamie made us something to eat, as we had not eaten for hours. We waited to be called to theatre to collect him again. After about an hour he returned looking much better, though his pupils were so dilated they were like little pin holes. He looked totally bewildered at us all, and was very sleepy.
Rachel and I sang him a song as he settled and within a few minutes he was fast asleep. He slept for 10 hours until the morning.
During that time he did not have any temperatures and they seemed to have miraculously stopped the moment the line was removed. The lab later confirmed it had the nasty bug on it too. The bug sticks to the plastic of the line and is not really affected by the antibiotics. There is a danger that when it is removed, the bugs will spread off the line and elsewhere. Hopefully that will not happen but is a distinct possibility.
The old line was taken out and two temporary ones were inserted in his foot and hand. The foot cannula was not successful and was removed by 1100h on the Sunday leaving him with just one remaining. The difficulty with this is Fred needs a lot of incoming fluids, more importantly for him TPN and painkiller.
He seemed happier once the morphine was dripped in constantly and so slept more and was generally happier.
My mum and dad came down on Monday (Day 203) and he awoke with a start and was pleased to see new faces. He went from bleary eyed to smiling and energetic in a few seconds and that was really nice for us all. Once mum and dad had gone he quietened down again and got a bit gripey.
Today he was due to go to theatre, being third on the AM emergency list. He was made up to being second and then was knocked off by an incoming emergency and so Fred was deferred to another day. The reason was to go back in theatre to have a semi-permanent line (PICC or peripherally inserted central cannula) put in his groin, which should be better than the hand cannula which cannot have blood removed from it because the vein is so tiny.
He will then go back to theatre in a few days time hopefully to have another Hickman line put in.
He goes to have another abdominal x-ray in the afternoon of the Monday (Day 203) as well as an ultrasound of his groin and neck in preparation for the new Hickman line.
I chat with Rachel and head home, as he seems stable for the moment.
The last few days have probably been the worst as we know what’s happening and understand the lingo being used, and can guess the seriousness of the situation. We know when certain people turn up certain hours he is in difficulty, and the fact he changes so quickly means it can be mentally tiring. Not knowing the complexities of it all makes you wonder, worry and speculate where all this is leading. Plus neither of us has had much sleep, especially when you stay in the hospital as you tend to stay awake just to check he does not have problems in the dark.
All of the people who were on duty at those times were all the people we would have liked to have been around and as we know them well by now it was very reassuring.
Fred still is open to all sorts of complications from all of this and we will have to wait and see what happens. It really is only worth taking each day as it comes.
It was lovely to see the messages on the ‘blog and the text messages I received when things were going a bit haywire. I might not have replied to them so my apologies if you heard nothing.
Hopefully the barrier nursing lark will stop soon as it is depressing in a 4m x 5m room with no view….
Claire will continue to do sterling work if I am unable. Thanks
Monday 22nd January 2007Tue, 01/23/2007 - 04:47 — endc011
Hello Bloggers
Freddie is still being barrier nursed through his Norwalk virus, so Tim is unable to leave his side to wander round the hospital looking for a computer to update the blog. He has sent a text version to my email, and I have cut and pasted it into the blog so that we can all stay up to date on Freddie's progress. Here it is (Claire Brown)
Fred late yesterday and early this morning remained in considerable abdominal pain regularly which meant very little sleep for up both.
He gets morphine back today as his previous pain killers are not working long enough.
The latter part of day is better and he is more relaxed which was good as my mum and dad visited.
He visited x ray again today in preparation for another new line being inserted in his groin, being scheduled third on the emergency AM list.
Sunday 21st January 2007
Mon, 01/22/2007 - 04:00 — endc011
Hello Bloggers
Freddie continues to be barrier nursed due to Norwlk virus, (see Saturday blog) so Tim is unable to get to a computer to update the blog. He has however sent me the following update via text on his mobile phone. If he sends any further updates, I will cut and paste them into the blog. (Claire Brown)
Fred continued to have regular high temperatures and all the problems they brought. He was getting very weak and the staff were becoming concerned.
He had an x ray and CT scan and it was decided to remove his hickman line urgently, as it was thought he had an infection in it.
He went to theatre at about 2130h and came out an hour later.
Very sleepy he slept for 10 hours.
One of the worst days so far seeing Fred in such pain and distress and one of the longest without sleep or much to eat.
Saturday 20th February 2007
Sun, 01/21/2007 - 02:39 — endc011
Hello Bloggers
Tim has text me and asked me to update the blog on his behalf to keep you all informed as to Freddie's progress.
Freddie is suffering with the Norwalk virus infection at the moment. This is a gastro-intestinal virus very common in winter, and the main symptoms are projectile vomitting and diahorrea; both of which we all know from Tim's vivid descriptions, Freddie has been suffering with.
Added to this Freddie has also had problems breathing and overnight/early morning his temperature rose to 41degrees centigrade.
Doctors have taken more x-rays and there is talk that Freddie may be admitted to PICU - paediatric intensive care unit to help him through this set back.
I'm sure you can all appreciate that with all this going on Tim may not find time to update the blog.
If I hear anymore news I will post details for all to see.
Until then, please leave your well wishes for Tim, Rachel and Freddie in the comments. I know they enjoy reading them.
Claire Brown
The following blog entry was received from Tim and posted Saturday 6.30pm referring to Friday 19th January 2007
Last night he achieved a temperature of 40c and was awake occasionally during the night.
I headed back in bright weather which was a contrast to the day before.
When I get into Freds room he seems pleased to see me. He is again a bit unsettled but active.
Not long after I arrive the doctors are reviewing some of his results and some have come back as him having Norwalk virus (norovirus) which means that he will be isolated once again. "Doors closing."
He sleeps and wakes but is not our jolly Fred. However he does get a platelets infusion which will help his clotting. He has been bruising easier than normal especially with his recent thrashings about in his cot.
Rachel heads off with her mum to the station and brings me back my tea of sushi, soda water and some crisps - all requested by me.
As I do not have any meds to give him or feeds I hopefully can have a quiet night tonight. His TPN has also changed in that it will be given over 18 hours rather than 12 not quite sure why.
I expect his temperature will rise soon as he is becoming more restless.
Day 199 (Thu 18 Jan)
Fri, 01/19/2007 - 06:07 — endc011
I awoke this morning in the very early hours to the high winds beating the area and was happy that I was not getting ready to wrestle with the now removed fence panels. They were still stowed on the ground where I had left them.
Rachel rang as I was preparing to leave and for a number of reasons I am to stay another night. Fred seems to be well and it is windy out there. Rachel's car is high sided proportionally and I did not relish the journey really so stood down my journey.
Fred had a good night and after a few grumbles in the night he slept on until 0900h which is good for him and Rachel.
One of the surgical team arrived as expected to review his stomach x-rays, but was not sure why he had been called. There were not any perforations or anything nasty in his stomach and hopefully the new antibiotics will sort him.
He has been far more relaxed today and has been smiling and wriggling about.
His temperature spiked last night though up to a record 40c which I think is about 104f. Probably his recorded highest so far, and not one we would want to repeat to often really. His temp. dropped after some meds though and he has remained fairly chirpy since.
He is still NBM I think and having all of his meds by IV which means they end up where they should.
Most of the day so far he has has numerous tubes connected to him which has restricted his "mobility" but he does mind I reckon.
Tonight I visited Wayne and Claire's for a marvelous feast and am I am now getting ready for my bed.
Day 198 (Wed 17 Jan)
Thu, 01/18/2007 - 04:39 — endc011
Last night I made some sausages though the two cloves of garlic I crushed did keep repeating on me during the day .
I rang Rachel a few times to check on Fred and last night he was much more settled than the previous two nights. In anticipation of him needing comforting, Rachel went to bed at 1930h and was disturbed a few times. He has curiously started sleeping on his side within the last two days, which is new to us and may be relevant.
The doctors had a look at him in the morning and his results of the abdominal x-ray came back clear which is good news. They decided that a chest x-ray is also needed which causes a bit of concern as I do not know why they did not do it at the time of the ab. one, but there might be a technical reason.
Fred has been fairly happy during the day, sleeping but waking to complain occasionally. He gets his pain killers as required though.
A further inspection by the radiologist on his abdominal x-ray reveals that there is some inflammation of his stomach which may well explain why he has not been tolerating his feeds, and that he has had an upset stomach. The lining is thickened in places, and so he is given more antibiotics more relevant to this. He is on four at the moment.
The surgical team have also been advised and they will have a look at him presumably in the next day or two. Not sure what their involvement will be.
As his stomach has been rested for the last day or two (NBM) he has reverted to sleeping on his back again - clever stuff Fred?
As a result of his fluid input, his weight has increased quite dramatically to 8.8k, and 800g increase in the last 24 hours. This can cause him some problems as we do not want to have him becoming "soggy" or "boggy" as his early days. I suspect they may give him a diuretic soon, such a Frusemide, or Froozy Juice to make him wee it out. Heavy nappies here we come! Apparently his face is starting to look a little puffy.
His chest x-rays came back clear too which was one less worry.
Today he seems a little happier and not in so much pain, though tonight will tell when the TPN starts again. It might not be a line infection after all thankfully.
Today I inspected the fence and noted the post had now snapped at the bottom and would take the good panels with it in the forthcoming winds tonight.
I decided to take the panels down and rescue them, and stow them safely in the garden until another time.
On the other side of the fence is a number of twiggy bushes that were revealed when the panels were removed. It needed me to get in to the inaccessible corner to prise the nails out of the posts so the panels could be slipped out. Then a peculiar thing happened. As I was shuffling into the twiggy undergrowth a thin branch poked itself into my left ear quite deeply. I was holding the heavy fence panel so it would not fall onto the fuschia bush, and flip back onto shins but as I shuffled along to get myself out, another twig went into my right ear.
Now, both ears have sharp twigs in them and I was left stranded when I tried to move. As I did not fancy pierced ear drums I had to stoop down slowly whilst still holding the panels and extricate myself. I did this successfully and chuckled to myself as I did so.
The panels are now safely stored and weighted down now for future installing you will all be pleased to hear.
Day 197 (Tue 16 Jan)
Wed, 01/17/2007 - 02:02 — endc011
I had hoped that last night Fred would be more settled and by late afternoon he was back to his normal self. He was being very vocal and playful again which was great fun. The towel on the head never ceases to make him laugh.
They came to put his TPN back on for the next 12 hours, and this is delivered by his Hickman line. It was a bit later than normal but that does not cause us or Fred any problems.
I was anticipating him having trouble again as each time it seems to have coincided with his TPN going through, but his temperature was normal at 37 or so. He nodded off and was catching up on his sleep lost from the night before.
During his deep sleep I noticed him occasionally twitch and I thought he was dreaming so I gave him a few prods, to which he woke up. He became distressed, much more than grumpy, and his temperature started to rise as well. Here we go again...
I watched it slowly rise in just under an hour to 39.4c and he became cold on his hands and feet again which is expected and he started to shiver a bit which I had not noticed before. They gave him some fluids again and some paracetamol and as he seemed to be in so much pain, they gave him some pethidine.
That started to take effect but by now it was midnight I think, and he was clearly in agony at times. He has a great deal of body strength and managed to "break dance" about his cot, with a danger of him yanking at his tubes which by then were all in use. The nurse decided to shunt the bed closer to the oxygen on the wall, should he need some, but did not.
He started to calm down a bit, but his temp dropped slowly and his hands and feet warmed again.
He slowly improved but kept waking as he was so tired.
I think I managed to nod off at about 0400h when I awoke to find him quiet and snoring quietly.
I woke again at about 0800h and he started again, feeling rather poorly so he had more pethidine.
As the problems seemed to have been triggered by the Hickman line being used, there is a thought that there might be a bug in the line. When pushed into the body, it starts the reaction and he gets sick very quickly. They gave him some anti-biotics specifically for bugs in the line and hopefully that would work.
He had some more pethidine and calmed down, with his temperature back to a more normal level.
This morning he was rather subdued and very quiet and looked quite sickly, which is not surprising really.
I had a chat with the nurses and doctors this morning and it may be the line infection, or alternatively the TPN may be causing a problem. It is rich in glucose and stuff which apparently is a good breeding ground for bugs. Also it was suggested that when the TPN goes in, it may cause irritation to him. It may be that the TPN is stopped to see what effect that has.
Trouble is, Fred is so small we cannot ask him and so have to guess in the absence of anything back from the laboratory.
He also has a bit of a cold, and his nose is a bit snotty and bunged up, so he may be feeling extra yucky.
They will also do a stomach and possibly a chest x-ray just to see if there is anything evident from that, and that should occur today hopefully.
Rachel and her mum were due back mid-morning and so I gave him a kiss goodbye, as he was fast asleep.
He apparently behaved quite well and mumbled a bit to himself during the day, but seemed more of himself. He had an x-ray of his stomach plus an echo, though we do not know the results as yet. Hopefully nothing serious will be revealed, but maybe something could help us know whats bothering him.
When I spoke to Rachel this afternoon, some results had come back and they have found a couple of nasty bugs in his gut (I think) and have changed his antibiotics to something more suitable.
They have also changed tack on the TPN thoughts, and he will be NBM for a while, so no milk or meds down his NG tube. I am told his meds will go via his line and his TPN will be increased to 100% of his requirements. I suspect that he will do a repeat of the last two nights but I am happy they are eliminating things as they go.
Fred was at around 1800 relatively happy but I do not want to tempt fate after the last 48 hours of him being poorly. It is horrible having to watch him appear to be in so much pain and just have to hold him down for a bit so as he does not injure himself on the bars of the cot, or get his tubes pulled out. Hopefully he understands somehow that we are all doing everything for him, and we are not just watching him rolling about. Very difficult, especially at that time of the day.
However, the staff each time have been brilliant and last night they were very busy at time, with other patients wanting attention. Whilst each parent always wants constant attention that's not possible as most of the time it is not necessary. Last night they were there whenever Fred needed assistance and it appeared soon afterwards, and seemed to do the trick in time. Amazing stuff medicine, really.
The fence in the garden is just as it was but I might try and tackle it tomorrow if possible. Will probably fall over tonight if there are high winds as predicted.
Day 196 (Mon 15 Jan)
Tue, 01/16/2007 - 01:52 — endc011
As I was typing Fred's good behaviour last night, he had been sick and was in a lot of abdominal pain. He was bending right back, screaming in quite a high-pitched scream that is unusual for him.
It would subside briefly and then come again. He continued like this for an hour or so, desperate to get some sleep at the same time.
His temperature was a normal 37c that went quickly up to 39.6c which is probably the highest to date. He seemed to very poorly indeed, and his hands and feet went rather cold, and his skin mottled. He still had these "cramps" and was occasionally writhing in pain, which was difficult to watch. They gave him fluids to improve his circulation, and this seemed to work in a matter of minutes which was good to see.
The staff gave him a variety of medicines, one being a relaxant in the working of the stomach and bowel, to hopefully help him. This quietened him for a bit, though from about 0100h to 0500h he was very unsettled and clearly in pain and did not sleep, so nor did I.
It was difficult to ignore his shouts at that time of the night so I managed to get some sleep at 0500h onwards for a bit, when he settled too.
Early this morning he was in difficulty again although his temperature has levelled out for the time being. He is also back on anti-biotics which will help hopefully.
Today he woke occasionally during the day and was in pain. He has smiled a few times, and I guess his cramps will come back again tonight.
Not much can be done really, though there was talk of stopping his NG feeds and just giving food by his TPN. They think the stomach cramps is to do with the previous chemotherapy and a combination of other things, so hopefully he will sort himself.
Today he has been completely the opoosite of yesterday.
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 towel 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.
Thursday 25 January 2007
Sunday 14 January 2007
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.
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.
Thursday 4 January 2007
Day 185 (Thu 04 Jan)
Fri, 01/05/2007 - 02:49 — endc011
I got up early today and had a cold shower as the hot water seems to have failed. At least it woke me up I suppose.
I shuffled back down the hill with all my carrier bags with Fred's stuff in and found Fred awake and chirpy in his bed. He had been fed by pump overnight and this seemed to have worked in most part, but he had been sick again in the early hours.
He was also sick a bit later on a few times, which is not what we wanted to happen. He has dropped to 8.14kg today, a loss of about 400g which is quite alot. They speak with the dietitian who suggests he gets more anti-sickness and we continue with the overnight feed again, though maybe a little less.
Rachel goes into town whilst I keep an eye on Fred. He has very rosy cheeks today for some reason, and other than the sickness seems very well indeed.
Not a great deal happens today, but once rachel has gone back to the house I pop into town for a quick wander and get something to eat. He is fast asleep when I come back, with his bottom lip wibbling about in his slumber.
It chilli noodles tonight, though I bought some peri-peri sauce to liven it up a bit. I shall also finish off some of the alcohol that is in the room. Tonight Fred and I are having a night in....
Day 184 (Wed 03 Jan)
Thu, 01/04/2007 - 21:07 — endc011
I spent last night with friends an hour or so away, Shaun and Victoria. Had some good grub and visited the pub opposite which made a nice change. I think it is the first time I have been "out" other than going home.
Fred has been sick quite a few times and is not holding his feed, which is a big worry. This has been going on for some time now, and he needs to keep on gaining weight. He still gets his feeds by his NG tube but it is difficult to determine whether he wants a feed or not.
He seems to be very cheerful and entertains Rachel and June during the day.
I come back from Shaun and Victoria's, only to be diverted following an accident on the A37. Along the diversion route there is another accident where a HGV has left the road spreading the hedge all over the place.
On getting back I find Fred a bit sicky still, but happy. We are still confined to the room to some extent, and Fred is certainly not allowed out.
We discuss the feed problem with his nurse. The dietitian has reviewed Fred and he is now on 850ml+ of Infatrini milk, which has 10% more calories, so that means he can have about 10% in volume. He was on 1050ml over a 24h period. It is now at a ratio of 100ml per 1 kilo of weight.
We come up with the idea that we could try and feed Fred on the pump overnight. This would mean that it would go down his tube whilst he is asleep at a rate of say 35ml/h and he would end up having 400ml without knowing much about it. The pump is set up and will dribble it in to his stomach over the next 12 hours or so.
The weather is pretty bad and I have a few bags of washing to do. Rachel will stay again, so I catch a cab to the house. The drivers windscreen is the greasiest and dirtiest I have ever seen, and he does not use the de-mister. It is dark and raining heavily as he carefully feels his way along the road. He sagely says to be "this rain makes visibility makes non-existent..."
Once in I fire up the large Dyson machine and then dry them off in the big tumbler.
I nod off listening to the radio, curious as to whether the milk pump is working on Fred.
Day 183 (Tue 02 Jan)
Tue, 01/02/2007 - 23:33 — endc011
Another excellent sleep and Fred did same all the way through to 0700h. I was awoken much earlier by one of the nurses telling me that Fred was nil by mouth today, which came as a surprise to Fred, myself and ultimately her. Wrong person....
I nodded back and fed Fred. He is on fine form today and very very lively, which is good. he looks all pink and chubby, but we must try and get his feeds going again.
The doctors come in and have a look at him. He seems OK, but I see one of the dietitians later and we change tack. he will have a higher calory milk today, plus more creamy/cheesy foods to fatten him. Today he weighed 8.44kg which is not bad but we want him 10kg plus in the next 12 weeks or so.
Rachel and June arrive and I bring her up to date with all the latest.
Fred is pleased to see familiar faces and goes all noisy and wriggly for a bit.
We decide lunch is required and Fred sleeps himself into happiness. He is due more chemotherapy later too, and this will be Day 5 of that I think. I have not seen the results of his latest blood tests today, or indeed yesterdays.
We have our lunch in the town and I come back ready to go over to some friends house to stay overnight.
Fred is currently having chocolate spread and hi-cal milk for his lunch. He was last seen looking very very messy.
Rach will stay here tonight.
The last few days the PC has been out of action here hence no 'blogs. Back now of course.
Hopefully everyone had a good new years celebrations......
Day 182 (Mon 01 Jan 2007)
Tue, 01/02/2007 - 23:27 — endc011
I had a good nights sleep as did Fred. He did not stir until 0500h when his nappy started to overflow. I had forgotten to change his nappy at midnight in all the excitement, and he was soaked through to the bed. he had not complained by one of the nurses noticed this when she moved him up the bed.
The morning was unremarkable and I went into town to get some bits but only Big Issue sellers and pigeons were there. All other shops closed so I came back.
Fred has sicked on most of his suits, due to the chemotherapy or the mixture of other things he is having. He does not look poorly but he is not retaining much food at the moment. He has only had half of his necessary amount which is of concern.
When he is sick, he is in some discomfort for a while. He gets anti-sickness drugs but they do not always help him.
He continues to bob along.
Tea tonight is provided and this is good. Makes a change.
Again, it is Fred and I and not much happens today.
Day 181 (Sun 31 Dec)
Tue, 01/02/2007 - 23:19 — endc011
I head back and meet with Rachel in the foyer. Weather is not too bad and it was a clear run up.
She heads off and i settle in with Fred. He is a little sick now and then, and we are being "barrier nursed" again as they think he might have an infection. Not quite the same restrictions as before, but still some.
I have some beer in the room so this will be tapped tonight I think. I will watch television and head off to bed early than normal.
I treat myself to a kebab and few tins of lager. Not the most exciting New Years Eve but is still one with Fred. When I went out there was not anyone about and it was heavy rain and wind. The greek restaurant where I buy my kebab from was full, and I wanted to sit down and have a meal, though Fred would suspect something.
At 2359h I was safely tucked into bed with a tin of lager and a full belly, watching BBC cover London. Lights out and curtains drawn I was ready to nod off. Through the door the curtains rustled and the three nurses came in. As I was the only one with the TV on at that time they wanted to see Big Ben strike, which we did. Afterwards they toddled off back on to the ward whilst I finished my can.
Happy New Year everyone.
Day 180 (Sat 30 Dec)
Sun, 12/31/2006 - 08:13 — endc011
I was listening with on ear open in the early hours when the World Service announced that Saddam Hussein had been hung. I opened both ears for a bit and nodded off only to wake a bit later to the howling winds again.
I peered put into the gloom and saw the fence panels still standing but at an angle greater than yesterday.
I awoke earlier than normal and had a hot bath and then headed over to get a paper. I have a little list of things to do today and want to try and get them done before heading back. I see in the Herald Express little Freddie is mentioned again in relation to a New Years "Disco-a-thon" at EJs Wine Bar in Torquay. Money is being raised by the pub for the Anthony Nolan Trust after them reading about Fred and the need for bone marrow donors. I was pleased to read that and had to go in and get a couple of other copies for the archives.
Breakfast at mum and dads and then I went into town with my brother. It was raining again and I managed to get over to Torquay. The streets are still crowded with those fevered to spend more money.
I try and fix the fence by propping it up but I am not sure whether this will work. It is heavy heavy rain and I am decked out in my outdoor work gear trying to sort it. I do my best and head back in to the house to potter around.
I end up back at Wayne and Claire's this evening, and meet up with Sean and Elena, and this was a good night.
Back early again as I want to try and get going tomorrow if I can, back to see Fred and let Rachel out of the hospital. I speak to her and she says he is jolly once again and she has been released from custody now.
As I type I hear the wind increasing once again.
Day 179 (Fri 29 Dec)
Sat, 12/30/2006 - 16:26 — endc011
After my sleep marathon I am restless until 0300h in the morning. It is either too hot or cold in the room, but Fred sleeps on oblivious to the world. His temperature today has been static and it has not dropped overnight, which is normally the case. I put his hat on for him, but it slips off.
In the morning I hear that his sodium levels have dropped which is unusual. However, he has missed some of his recent sodium bicarbonate meds through either vomiting them up just after having them, or possible missing them through being NBM, or just coming out of theatre.
He gets a bag that will go in IV.
Rachel comes in with a parcel of hot food. We munch this and it is good. We discuss our confinement and barrier nursing situation with the nurses and we have been free of symptoms for over 48 hours. Fred has been fine, though has been sick in the last 12 hours or so. For this reason one of the doctors decides we need to be contained for another 36 hours. This is a bitter disappointment as Fred is regularly sick anyway, and had been to theatre that day with a GA.
He always feels yucky after his op, but we have no choice.
To be confined for another 36 hours is maddening. When you have been here against your will for six months, being restricted further is immensely soul destroying. We are not aware that he an infection as of yet.
Rachel reckons it would be a good idea for me to head home until Sunday, and when I come back she will return. This seems like a good idea, so I collect my things and head west.
Fred is in a good condition and will hopefully remain so. He is due his first batch of chemotherapy tomorrow, and this will last for five days.
The weather is misty and wet on the way back and I get back in normal time.
I manage to visit Abi for a haircut and she spies some redness on my scalp. Stress she reckons, but it could the soap I use for washing my hair at the hospital shower. I keep forgetting to take down my Head and Shoulders which normally keep my bonce in tip-top condition.
I meet up with Wayne and Claire again and have a good night. I settle down to the World Service and the high winds shake our fence panels to their limits.
Day 178 (Thu 28 Dec)
Fri, 12/29/2006 - 00:20 — endc011
I stay in bed as long as I can as I am absolutely exhausted. I have not done much for six months but I manage to get some good sleep. I wake up with a back pain from sleeping too much though.
Fred has been booked another slot in theatre today and this should all go to plan. They will take a sample of bone marrow to see if the leukaemia has returned. On the day we were recalled (01 Dec) there should not have been any leukaemic cells in the marrow. At that time there was something like 60% which was a major setback and ruined his chance of a bone marrow transplant.
They explained that for the disease to come back that quickly meant it was far more aggressive than thought, and our best "first choice" had been used up. If Fred had been unwell at that point, and not deemed fit enough for further treatment, they touched on the subject of balancing Fred's quality of life with the realistic chances of success, given the recent results. In other words he would be able to come back home with us, but not receive further chemotherapy treatment.
That was obviously the worst news we could have had then. However, they did feel that Fred was well and if we were in agreement, we could carry on with a different protocol.
He had five days of chemotherapy and just before Christmas the bone marrow aspirate showed that it was clear which was good news. However, they needed to do another one (today) to see if the leukaemic cells had come back and in what number. If it was a good result he would have a further block of chemotherapy and then they would decide what to do. If the result was not good, we could look at a clinical trial, though things would be getting desperate by then.
Today Fred had his aspirate and I learnt the results later on in the evening. They had come back remarkably clear, with only about 3% leukaemic cells, which was alot less than the consultant Michelle expected. She was pleased at this and explained that he would start his chemotherapy on Saturday 30 December, rather than after the New Year as time was of the essence. After the weeks block of chemotherapy, there would be a three week wait, or less, and then all being well he would have his bone marrow transplant.
They would not wait for the marrow to recover as normal, and they would not take a "harvest" as a back up. They have other means should problems occur but I think they know his current marrow would not be of any use in future.
This was good news, but we have been down this road before so we will have to wait to see what happens. Either way, it is the best news that we could have received given the circumstances.
They will start him off tomorrow with some GSCF (see glossary) and we will have to see how it affects little Fred.
He is dropping eyelashes again due to the previous chemotherapy taking effect, but I can see little hair spikes growing again. Sadly they will drop too soon.
I spend the night in our cell pleased at the news but worrying about the pitfalls of a bone marrow transplant holds.
Thursday 28th December 2006
Thu, 12/28/2006 - 20:56 — endc011
Hello Blog Readers
I have been asked by Tim to update the blog on his behalf as he is unable to do so himself.
Unfortunately the sickness bug that Freddie was suffering with in the early hours of Christmas Day, and necessitated their return to the hospital at such an early hour has been passed on to both Tim and Rachel. They have both been asked to stay away from the hospital and Freddie for the time being to prevent re-infection.
Both are now staying at the CLIC flat to recuperate and they do not have access to a computer to update the blog.
If you are reading this blog, please leave a comment with your well wishes for them. It must be heartbreaking for them to have to be away from precious Freddie at such a special time of year, and I know they very much enjoy reading your comments, knowing that others care.
The blog will return to normal service shortly. Watch this space!
Claire.
Day 177 (Wed 27 Dec)
Thu, 12/28/2006 - 00:13 — endc011
I end up being sick during the night and am woken by Fred at 0500h. I give him his last feed and try to sleep. Unfortunately Fred has other ideas and cries and calls until about 1130h. By then I am not feeling right, and I am waiting for the call to go to theatre.
I pull Fred's pram alongside the bed and let him play with my hand whilst I try and sleep. I can still hear him crying as I nod off, but I cannot do anything to help him. He is hungry and poorly. I have checked him nappy and tried to give him a hug, but he just gets more frustrated. I amazingly fall asleep amongst all this din.
I wake up to find Fred asleep and he has pulled my hand to his mouth and I find I have wet fingers. He has obviously been sucking on them but I guess they taste of Spirigel by now.
I am informed that Fred's name has dropped off the list and he can now be fed.....
I ask one of the nurses to do the deed and they reckon I should head back to the house, which I do.
I get in and Rachel is there looking poorly too. I manage to get some sleep.
Rachel decides to go back down later on and finds Fred alot perkier. She too is restricted to the room to some extent but is not told that she cannot flit in and out.
Fri, 01/05/2007 - 02:49 — endc011
I got up early today and had a cold shower as the hot water seems to have failed. At least it woke me up I suppose.
I shuffled back down the hill with all my carrier bags with Fred's stuff in and found Fred awake and chirpy in his bed. He had been fed by pump overnight and this seemed to have worked in most part, but he had been sick again in the early hours.
He was also sick a bit later on a few times, which is not what we wanted to happen. He has dropped to 8.14kg today, a loss of about 400g which is quite alot. They speak with the dietitian who suggests he gets more anti-sickness and we continue with the overnight feed again, though maybe a little less.
Rachel goes into town whilst I keep an eye on Fred. He has very rosy cheeks today for some reason, and other than the sickness seems very well indeed.
Not a great deal happens today, but once rachel has gone back to the house I pop into town for a quick wander and get something to eat. He is fast asleep when I come back, with his bottom lip wibbling about in his slumber.
It chilli noodles tonight, though I bought some peri-peri sauce to liven it up a bit. I shall also finish off some of the alcohol that is in the room. Tonight Fred and I are having a night in....
Day 184 (Wed 03 Jan)
Thu, 01/04/2007 - 21:07 — endc011
I spent last night with friends an hour or so away, Shaun and Victoria. Had some good grub and visited the pub opposite which made a nice change. I think it is the first time I have been "out" other than going home.
Fred has been sick quite a few times and is not holding his feed, which is a big worry. This has been going on for some time now, and he needs to keep on gaining weight. He still gets his feeds by his NG tube but it is difficult to determine whether he wants a feed or not.
He seems to be very cheerful and entertains Rachel and June during the day.
I come back from Shaun and Victoria's, only to be diverted following an accident on the A37. Along the diversion route there is another accident where a HGV has left the road spreading the hedge all over the place.
On getting back I find Fred a bit sicky still, but happy. We are still confined to the room to some extent, and Fred is certainly not allowed out.
We discuss the feed problem with his nurse. The dietitian has reviewed Fred and he is now on 850ml+ of Infatrini milk, which has 10% more calories, so that means he can have about 10% in volume. He was on 1050ml over a 24h period. It is now at a ratio of 100ml per 1 kilo of weight.
We come up with the idea that we could try and feed Fred on the pump overnight. This would mean that it would go down his tube whilst he is asleep at a rate of say 35ml/h and he would end up having 400ml without knowing much about it. The pump is set up and will dribble it in to his stomach over the next 12 hours or so.
The weather is pretty bad and I have a few bags of washing to do. Rachel will stay again, so I catch a cab to the house. The drivers windscreen is the greasiest and dirtiest I have ever seen, and he does not use the de-mister. It is dark and raining heavily as he carefully feels his way along the road. He sagely says to be "this rain makes visibility makes non-existent..."
Once in I fire up the large Dyson machine and then dry them off in the big tumbler.
I nod off listening to the radio, curious as to whether the milk pump is working on Fred.
Day 183 (Tue 02 Jan)
Tue, 01/02/2007 - 23:33 — endc011
Another excellent sleep and Fred did same all the way through to 0700h. I was awoken much earlier by one of the nurses telling me that Fred was nil by mouth today, which came as a surprise to Fred, myself and ultimately her. Wrong person....
I nodded back and fed Fred. He is on fine form today and very very lively, which is good. he looks all pink and chubby, but we must try and get his feeds going again.
The doctors come in and have a look at him. He seems OK, but I see one of the dietitians later and we change tack. he will have a higher calory milk today, plus more creamy/cheesy foods to fatten him. Today he weighed 8.44kg which is not bad but we want him 10kg plus in the next 12 weeks or so.
Rachel and June arrive and I bring her up to date with all the latest.
Fred is pleased to see familiar faces and goes all noisy and wriggly for a bit.
We decide lunch is required and Fred sleeps himself into happiness. He is due more chemotherapy later too, and this will be Day 5 of that I think. I have not seen the results of his latest blood tests today, or indeed yesterdays.
We have our lunch in the town and I come back ready to go over to some friends house to stay overnight.
Fred is currently having chocolate spread and hi-cal milk for his lunch. He was last seen looking very very messy.
Rach will stay here tonight.
The last few days the PC has been out of action here hence no 'blogs. Back now of course.
Hopefully everyone had a good new years celebrations......
Day 182 (Mon 01 Jan 2007)
Tue, 01/02/2007 - 23:27 — endc011
I had a good nights sleep as did Fred. He did not stir until 0500h when his nappy started to overflow. I had forgotten to change his nappy at midnight in all the excitement, and he was soaked through to the bed. he had not complained by one of the nurses noticed this when she moved him up the bed.
The morning was unremarkable and I went into town to get some bits but only Big Issue sellers and pigeons were there. All other shops closed so I came back.
Fred has sicked on most of his suits, due to the chemotherapy or the mixture of other things he is having. He does not look poorly but he is not retaining much food at the moment. He has only had half of his necessary amount which is of concern.
When he is sick, he is in some discomfort for a while. He gets anti-sickness drugs but they do not always help him.
He continues to bob along.
Tea tonight is provided and this is good. Makes a change.
Again, it is Fred and I and not much happens today.
Day 181 (Sun 31 Dec)
Tue, 01/02/2007 - 23:19 — endc011
I head back and meet with Rachel in the foyer. Weather is not too bad and it was a clear run up.
She heads off and i settle in with Fred. He is a little sick now and then, and we are being "barrier nursed" again as they think he might have an infection. Not quite the same restrictions as before, but still some.
I have some beer in the room so this will be tapped tonight I think. I will watch television and head off to bed early than normal.
I treat myself to a kebab and few tins of lager. Not the most exciting New Years Eve but is still one with Fred. When I went out there was not anyone about and it was heavy rain and wind. The greek restaurant where I buy my kebab from was full, and I wanted to sit down and have a meal, though Fred would suspect something.
At 2359h I was safely tucked into bed with a tin of lager and a full belly, watching BBC cover London. Lights out and curtains drawn I was ready to nod off. Through the door the curtains rustled and the three nurses came in. As I was the only one with the TV on at that time they wanted to see Big Ben strike, which we did. Afterwards they toddled off back on to the ward whilst I finished my can.
Happy New Year everyone.
Day 180 (Sat 30 Dec)
Sun, 12/31/2006 - 08:13 — endc011
I was listening with on ear open in the early hours when the World Service announced that Saddam Hussein had been hung. I opened both ears for a bit and nodded off only to wake a bit later to the howling winds again.
I peered put into the gloom and saw the fence panels still standing but at an angle greater than yesterday.
I awoke earlier than normal and had a hot bath and then headed over to get a paper. I have a little list of things to do today and want to try and get them done before heading back. I see in the Herald Express little Freddie is mentioned again in relation to a New Years "Disco-a-thon" at EJs Wine Bar in Torquay. Money is being raised by the pub for the Anthony Nolan Trust after them reading about Fred and the need for bone marrow donors. I was pleased to read that and had to go in and get a couple of other copies for the archives.
Breakfast at mum and dads and then I went into town with my brother. It was raining again and I managed to get over to Torquay. The streets are still crowded with those fevered to spend more money.
I try and fix the fence by propping it up but I am not sure whether this will work. It is heavy heavy rain and I am decked out in my outdoor work gear trying to sort it. I do my best and head back in to the house to potter around.
I end up back at Wayne and Claire's this evening, and meet up with Sean and Elena, and this was a good night.
Back early again as I want to try and get going tomorrow if I can, back to see Fred and let Rachel out of the hospital. I speak to her and she says he is jolly once again and she has been released from custody now.
As I type I hear the wind increasing once again.
Day 179 (Fri 29 Dec)
Sat, 12/30/2006 - 16:26 — endc011
After my sleep marathon I am restless until 0300h in the morning. It is either too hot or cold in the room, but Fred sleeps on oblivious to the world. His temperature today has been static and it has not dropped overnight, which is normally the case. I put his hat on for him, but it slips off.
In the morning I hear that his sodium levels have dropped which is unusual. However, he has missed some of his recent sodium bicarbonate meds through either vomiting them up just after having them, or possible missing them through being NBM, or just coming out of theatre.
He gets a bag that will go in IV.
Rachel comes in with a parcel of hot food. We munch this and it is good. We discuss our confinement and barrier nursing situation with the nurses and we have been free of symptoms for over 48 hours. Fred has been fine, though has been sick in the last 12 hours or so. For this reason one of the doctors decides we need to be contained for another 36 hours. This is a bitter disappointment as Fred is regularly sick anyway, and had been to theatre that day with a GA.
He always feels yucky after his op, but we have no choice.
To be confined for another 36 hours is maddening. When you have been here against your will for six months, being restricted further is immensely soul destroying. We are not aware that he an infection as of yet.
Rachel reckons it would be a good idea for me to head home until Sunday, and when I come back she will return. This seems like a good idea, so I collect my things and head west.
Fred is in a good condition and will hopefully remain so. He is due his first batch of chemotherapy tomorrow, and this will last for five days.
The weather is misty and wet on the way back and I get back in normal time.
I manage to visit Abi for a haircut and she spies some redness on my scalp. Stress she reckons, but it could the soap I use for washing my hair at the hospital shower. I keep forgetting to take down my Head and Shoulders which normally keep my bonce in tip-top condition.
I meet up with Wayne and Claire again and have a good night. I settle down to the World Service and the high winds shake our fence panels to their limits.
Day 178 (Thu 28 Dec)
Fri, 12/29/2006 - 00:20 — endc011
I stay in bed as long as I can as I am absolutely exhausted. I have not done much for six months but I manage to get some good sleep. I wake up with a back pain from sleeping too much though.
Fred has been booked another slot in theatre today and this should all go to plan. They will take a sample of bone marrow to see if the leukaemia has returned. On the day we were recalled (01 Dec) there should not have been any leukaemic cells in the marrow. At that time there was something like 60% which was a major setback and ruined his chance of a bone marrow transplant.
They explained that for the disease to come back that quickly meant it was far more aggressive than thought, and our best "first choice" had been used up. If Fred had been unwell at that point, and not deemed fit enough for further treatment, they touched on the subject of balancing Fred's quality of life with the realistic chances of success, given the recent results. In other words he would be able to come back home with us, but not receive further chemotherapy treatment.
That was obviously the worst news we could have had then. However, they did feel that Fred was well and if we were in agreement, we could carry on with a different protocol.
He had five days of chemotherapy and just before Christmas the bone marrow aspirate showed that it was clear which was good news. However, they needed to do another one (today) to see if the leukaemic cells had come back and in what number. If it was a good result he would have a further block of chemotherapy and then they would decide what to do. If the result was not good, we could look at a clinical trial, though things would be getting desperate by then.
Today Fred had his aspirate and I learnt the results later on in the evening. They had come back remarkably clear, with only about 3% leukaemic cells, which was alot less than the consultant Michelle expected. She was pleased at this and explained that he would start his chemotherapy on Saturday 30 December, rather than after the New Year as time was of the essence. After the weeks block of chemotherapy, there would be a three week wait, or less, and then all being well he would have his bone marrow transplant.
They would not wait for the marrow to recover as normal, and they would not take a "harvest" as a back up. They have other means should problems occur but I think they know his current marrow would not be of any use in future.
This was good news, but we have been down this road before so we will have to wait to see what happens. Either way, it is the best news that we could have received given the circumstances.
They will start him off tomorrow with some GSCF (see glossary) and we will have to see how it affects little Fred.
He is dropping eyelashes again due to the previous chemotherapy taking effect, but I can see little hair spikes growing again. Sadly they will drop too soon.
I spend the night in our cell pleased at the news but worrying about the pitfalls of a bone marrow transplant holds.
Thursday 28th December 2006
Thu, 12/28/2006 - 20:56 — endc011
Hello Blog Readers
I have been asked by Tim to update the blog on his behalf as he is unable to do so himself.
Unfortunately the sickness bug that Freddie was suffering with in the early hours of Christmas Day, and necessitated their return to the hospital at such an early hour has been passed on to both Tim and Rachel. They have both been asked to stay away from the hospital and Freddie for the time being to prevent re-infection.
Both are now staying at the CLIC flat to recuperate and they do not have access to a computer to update the blog.
If you are reading this blog, please leave a comment with your well wishes for them. It must be heartbreaking for them to have to be away from precious Freddie at such a special time of year, and I know they very much enjoy reading your comments, knowing that others care.
The blog will return to normal service shortly. Watch this space!
Claire.
Day 177 (Wed 27 Dec)
Thu, 12/28/2006 - 00:13 — endc011
I end up being sick during the night and am woken by Fred at 0500h. I give him his last feed and try to sleep. Unfortunately Fred has other ideas and cries and calls until about 1130h. By then I am not feeling right, and I am waiting for the call to go to theatre.
I pull Fred's pram alongside the bed and let him play with my hand whilst I try and sleep. I can still hear him crying as I nod off, but I cannot do anything to help him. He is hungry and poorly. I have checked him nappy and tried to give him a hug, but he just gets more frustrated. I amazingly fall asleep amongst all this din.
I wake up to find Fred asleep and he has pulled my hand to his mouth and I find I have wet fingers. He has obviously been sucking on them but I guess they taste of Spirigel by now.
I am informed that Fred's name has dropped off the list and he can now be fed.....
I ask one of the nurses to do the deed and they reckon I should head back to the house, which I do.
I get in and Rachel is there looking poorly too. I manage to get some sleep.
Rachel decides to go back down later on and finds Fred alot perkier. She too is restricted to the room to some extent but is not told that she cannot flit in and out.
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