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.