A Fine Line

William's bug is responding really well to the antibiotics and I would have been hoping to go home some time next week. Things are never that straight forward with William these days. His fluid balance has gone a bit off and he is currently on his TPN 24 hours a day and extra fluid overnight. We are really hoping things settle down over the next few days as we will not be allowed home until he is stable on something like his current home regime. We are VERY lucky as we have learned that William is growing a bug called enterobacter sakazakii. This is a very nasty little bug. We found it early and he responded to the treatment. We do think it has been living in his gut for some time though where it would have done a lot of damage. If so, this could explain why his condition has deteriorated so quickly over the last few months. I am a bit of a detective and keep questioning the docs about it all. Of course, no-one knows and no-one would like to commit to a strong opinion but they all agree that it is a viscious circle. Bugs like this attack the gut, the symptoms get worse, more bugs colonise the gut and attack it...to the point that the cells that are there to protect the rest of the body from this bug ecosystem are not destroyed, providing a route out for any little blighters who fancy taking a stroll around the rest of William's body. When they find his line they think all their Christmasses have come at once - there is a nice wall to cling to, plenty of food and no immune system to attack them once the TPN has been stopped and the line is clamped. There they breed, ready to be pushed back in greater numbers when the line is used again. Our team are researching 'line locks' - an antibacterial solution that can be put into the line while it is not being used to make it a lot more hostile to potential inhabitants. Of course, we need to get back to something less that 24 hour TPN again before this becomes relevant.

As William has this nasty little bug, we are in strict isolation. There were no cubicles on our usual ward so we are next door. At first, I was very unhappy about this. Here, I am going to get a bit controversial and I would be really interested to hear if anyone else has had similar experiences in hospital and, indeed, if and how things are different among other groups of patients in other hospitals. When we first arrived as a 'gastro family' in our hospital we entered a very strange world of parents and children who lived for months, even years, in hospital or in and out of hospital. At that time, this was a very supportive set of people. We were like a family. Readers that have been with me from the start will know all about the beautiful Riley and his wonderful parents, Helen and Adam. We shared a double bay and we were like flat mates. Riley died and we were all devestated. He was one of six gastro children who passed away that year and everyone was looking out for each other. We were worried for each other when the children were sick and happy for each other when things went well. Things are very different now. There are a lot of families who have been around for a very long time living in an institution. There is a kind of hierarchy now - almost a 'top dog'. This is a bit fluid and can alter a bit depending on who is in. We are not so supportive of each other and there is almost an element of 'competitive parent syndrome' going on among some of the parents. If we were in school, certain children would be the best. Here, they are the sickest. Perhaps because the sickest child is the best patient and that is the most important measure in this strange and un-natural community we are in. It is only too easy to get sucked in and join in. I have never liked this but now I feel even less a part of it all. I was feeling a bit alienated but my precious week of 'normality' when all my children were at school and I could come home and work, clean the house and get a hair cut has woken me up again to what life should be about. I am so glad I went to the first session of my journalism course rather than staying here on Wednesday as that was a turning point - I chose keeping my grip on the real world over getting pulled back into the things that matter in this world. At first, when we were moved to a new ward where William know no-one at a time when he was feeling unwell and I was worried about him did upset me. I felt that it reflected our standing in this wierd hierarchy. However, we settled here quickly and I am now enjoying the break from 'parent politics'. It is a lot easier to keep my head down and get some work done in the evenings and I have found myself much less frustrated by things. That is not to say that I don't like it on our usual ward, far from it. That is our second home and I miss the staff. They are only next door though and I have still been able to chat things over with those who know Wills the best. It is nice to meet new people too. When we first got here, I was begging them to find a way to get us back to our usual ward. Now, I am easy either way. There are good and bad things about both. I have reflected and learned a lot from the break from the norm and am armed with new strategies to enable me to keep being the me I am at home and not to become institutionalised. I think a lot of this has to do with the optimism I am feeling that we will get the transplant eventually and be out of this world as it exists at the present time for good.

I wonder it anyone has made any sense of any of that. I have been vague as it is all about an overview and perceptions than anything specific. I know my blog is read by other parents of children who spend time in hospital and by adults and young people who have spent a lot of time in hospital themselves. Does any of this ring any bells? What kind of communities have you experienced? How does our behaviour change when we become institutionalised? On a wider level, I wonder what has made things so different now than they were when we were here with folk like Riley. Have the situations changed, is it just as simple as personalities, have we as humans changed over the last three years or is it just me and my perceptions??

Being isolated and being set free.

William has been much better today, although he needed several fluid boluses (fluids pumped in quickly in resonse to dehydration shown in blood tests) and is currently having a blood transfusion as his red cell count has dropped. He has a funny bug in his line that set the infection control team into a bit of a spin so he is now in isolation. The good thing is peace and quiet for me but the bad thing is that Wills can't go to school. He should be out of isolation soon as his temperature is responding to his antibiotics really quickly this time. I hope we will be re-activated on the transplant list at the end of the week or beginning of next.

I was due to begin a journalism course at London City Lit today. William's fantastic school health care assistant came in so I was able to go. The nurses were really impressed that I left Wills and set out to do things I wanted to do, in my nice sleek hair (yep, it is still sleek and I am roud of my straightening skills!) and dressed as best I could in the circumstances. I was so glad I made the effot. I do writing courses by distance learning but I so yearn to get out and meet people. Being Mum to a child like Wills is very isolating. I was really pleased when the tutor announced that all her groups tend to stay in touch after the course and support each other in establishing their careers. That was exactly what I was wanting out of this. I learned some useful nuggets of advice in this first session. I hope I can get to enough to bond with the other students. It only took 30 minutes from our Chelsea Pad so there is no reason why I can't continue while we are there. Birmingham is a different issue. Maybe it is good to start things that I hope to finish before we get the call. Maybe the call is more likely to happen that way. City Lit is an amazing place. The whole college is dedicated to adult learning and it was full of vibrance and creativity. I passed rooms of people playing instruments, painting, singing 'Killing Me Softly' as well as writing. The whole place was full of energy with people keen to learn new skills for leisure, self-discovery or career change. I will really look forward to Wednesdays. Most of the courses are one two hour session a week and a term long. I fully intend to have one on the go each term and am already selecting the next.

I am experimenting with photography to capture this hospital admission in an 'artistic' way (if you call this kind of thing art) or 'reportage', 'documentary' or just weird and slightly crazy pictures...anyway, some are about to go up on my arty-farty blog. I will then do some very exctiting things such as registering student membership of the National Union of Journalists (NUJ), giving me a pass to access 'press only' areas and functions. How cool is that? Maybe I will be able to take pictures in the Tate with that? I was stopped the other day and I was just taking shadows of people in a white room with big red canvasses all around them. Not fair really, painters and drawers can work in there and record whatever they like but not photographers. From now on, I am a student photographer and journalist and am going to start behaving as such!

Suspension

We had all been having a lovely time at home and the children had settled well into school. It was great enjoying normal life but the bubble had to burst eventually. We are back in hospital with yet another line infection and the girls are away at their Grandparents. It feels wierd and pretty horrible to be back. Wills was quite poorly today but we have caught this bug quickly and are hoping he will get over it quickly and we'll be home in a couple of weeks. William will be suspended from the transplant list for a few days while he is still 'septic' with the infection. That is harder than I thought it would be as I can't help thinking 'what if...'

It is especially hard for Hope who was due to have a French exchange student to stay next week. Once again, plans have been shelved.

Look at my beautiful children!

I've been playing with my new toy again today. Aren't these children beautiful! It is lovely to be able to capture them so well. William has been feeling tired and emotional and a tad under the weather today so no smiles from him!

A Free Day in London

Indian Summer Splash

Experiencing Art 'Out of Bounds'

'Up on The Roof'

On Guard

South Bank Beat

A View From the Gallery

Today was a lovely day. I sauntered around London on my own. My main aim was to practise shooting with my new camera. I took 222 pictures, saved 55 and these are the highlights. They even met with Paul's seal of approval! It was so nice to wander around with 7 hours to myself. I rediscovered some places I haven't had a chance to get to for a while, such as The South Bank and found some new places, like the Institute of Contemporary Art. I did some things I used to enjoy doing, and hope to do more of now William is at school. I love walking around and watching people. I did a lot of that today. I read that taking up photography makes you look at things differently and I certainly found that today. I noticed things I have never seen before, textures and contrasts that have been hidden from me for all these years. I started my day in the Tate Modern members room. That is a place I love to sit in and read or do some work. It is 'Open Rehearsal' weekend this week where art galleries and concert halls open up parts not usually available for public view. The Tate had its basement open and it looked great but was sold out. So, instead of down, I went up onto the balcony of the Institute of Contemporary Art on The Mall where I experienced a sound installation (the legs in the photo are not me!). I have never been to this gallery before and enjoyed the 'vibe' of the place. I will be back. I wandered around a little bit more and ended the day sitting in on a rehearsal with Billy Brag for a 'Big Busk.' That was a lot of fun with lots of people singing along and playing guitars with a bit of help from giant chord cards being held up on the stage. Everything (apart from the coffee in the Tate and a sandwich from Tesco at lunchtime) was free! There is so much to do on our doorstep. I am determined to get myself and the children out doing things when we are all together and Wills is well.

It is wonderful to be able to spend time away from everything and even allow myself to stop thinking about it and experiencing art or looking for a good shot instead. In the lovely Indian Summer's day it almost felt like I was on holiday. The girls are having a break away so we will all be refreshed. A good job too really as William had a bit of a dip when we accessed the line to put him on his TPN today. His temperature went up a bit and he went a bit flat and sleepy. Paul really thought he was going septic but he stabilised. His tummy is very distended today and his stoma output is up. It certainly looks like he is brewing up a line infection. I really hope not but I do feel like we have had a bit of a break. I have been able to stop and reflect for a while. I think women do that when they head towards 'middle age'. We get all creative and go on journeys of self-discovery and expression. Of course, I would rather our life were more simple but I am enjoying this age phase of my life.

Tired boy!

William has just completed his first week of school! As you can see in the pictures - he is a very tired boy! He is doing really well and has already read through nearly all stage 1 of 'The Oxford Learning Tree' books. His fine motor skills are a fair bit behind his cognitive abilities so his teacher and occupational therapist are exploring IT to help him record. It may be that his cerebral palsy or underlying genetic condition is impacting his fine motor skills but we will gently try to see if he can develop his writing.

He is very tired these days tends to lean on the table and play when he is flushed off his TPN. He no longer runs around very much. His tummy is very distended and gassy and he seems uncomfortable a lot of the time. We are bracing ourselves for the next line infection as these kind of symptoms do tend to come first. We have been saying that for a while now though and Wills is doing very well and has been home for two and a half weeks now! His record time home over the last year is 5 weeks so we will see if he can beat it this time - unless, of course, he is called for his transplant. He so desperately needs that now. He has bags under his eyes all the time and, although he can look well for him, he never looks really healthy. I want to see him running around again and I want to see red cheeks - we only see that when he has a high temperature!

The girls are away this weekend at 'Honeypot House' a charity that supports children whose home life is difficult, for a variety of reasons. They gives the children an annual weekend away at 'Honeypot House' - a place where children come back like bees to a honeypot! This is their second time going and they love it. It is very quiet here!

The pictures of William above were taken with my new toy. I had a meeting in London today and took the opportunity to take some shots. They were all white!!! I read through the instructions and realised the auto setting should enable automatic focus and exposure. My camera was doing neither - no lights, no beeps! At least I have learned to focus manually and I do want to learn to play with exposure and shutter speeds etc so I can manipulate them for creative effects but one thing at a time - for now, I just want to be able to take good shots while I learn it all and my lovely little camera was not letting me! So, off to Jessops I went to tell them it was malfunctioning. They had a go and agreed it wasn't working. It took them 2 mintutes to diagnose and fix the problem...lesson number 1 - how to put the lens on properly!!! So, I have re-shot the images on my 'arty farty' blog as it has been lovingly called among my nearest and dearest. The girls are getting into it. Their favourite photo so far is the one of syringes full of hepsol (used to thin the blood in the line when it it not in use and to keep it patent). Hope went so far as to rave about it being 'really cool'. Paul is not so impressed by these kind of images. I went to the Tate Modern today and visited the Rothco exhibition and a room with photos of all sorts, including close ups of bricks on houses and a corner with a mop and bucket. With the girls away and Wills tired enough to drop to sleep immediately, we should have plenty of opportunity for a grown-up conversation tonight. Perhaps 'what is art' will be a good place to start.

I can't believe I did that!

I went out this morning without my mobile phone!!! I have been so good at making sure it is with me all the time. I just forgot this morning. It occured to me half way round the supermarket. I had a dilemma - buy the milk and loo rolls or hot foot it straight home! I hastened my step around the store and rushed home. Thankfully there was no missed call!

While I have your attention, please read on and support Holly. It will be fantastic for Holly and for William and everyone else waiting for a transplant if she wins a slot on the programme. I have lifted this straight of Emily's blog - hope you don't mind Em.

Channel Four are doing a programme called Battlefront where young campaigners are fighting hard to get their cause featured. 19 have been picked and there is one space left.LLTGL Advocate Holly Shaw, has had her "Gift of Life" campaign idea accepted! And now it's over to us.Channel 4 are going to pick the most popular campaign to go through to their final group, with their favourite ones being featured on the Battlefront TV programme. To vote people have to do is visit the website above and click on "Vote". That's it! No need to register or anything else. So please, for the love of pie, vote, pass this on, spread the word, hassle friends/work colleagues etc. http://battlefront.co.uk/campaign/the-gift-of-life/ Holly has a disadvantage in that she has only just got her campaign on the website and voting ends next week (1st October). So we are asking as many people as possible to put a link up about this on their websites, Myspaces, Facebooks, etc. so we can get this campaign on channel 4. Really appreciate any help anyone can give - it would be such a shame for Channel four to run this thing without anything about organ donation whatsoever...

A new toy

Wednesdays are going to be my 'me days'. I am not going to do any work. It is a day for me to develop the things I want to do (although I did end up doing some urgent work email correspondence today). However, I also went shopping for a new toy. Feeling ever more excited about my creative response to my journey with William, Hope and Ellie and particulary inspired by 'Transplant', I bought myself an entry level digital SLR camera to enable me to get a lot more creative with my photography. I decided to a use a little of the money the tax man owes me for taking far too much from me for 6 months. The girls have been fighting over my existing camera, that I will still carry in my handbag. I am going to buy them an easy to use 'point and shoot' digital camera each as well so I can teach them too and they can learn to capture elements of their life too. It is important for them to be able to do this as well. I am finding it a hugely enriching and therapeutic experience to explore our lives creatively. Paul is not impressed. He doesn't get the kind of art represented by 'Transplant' at all so appreciates my amateur offerings even less.

I have had a little play with my new toy, you can see the first results on the other blog. It is a start, there is a lot to learn. I have always enjoyed playing with photography and still have black and white prints of school folders covered in tippex written band names and logos from my attempts to capture my 'Goth' years during the lat 1980s. I love photographic images. I always want to know more and can stand in front of a picture for ages inventing the stories that go with it. I think photography and writing complement each other very well and these will be the main media I will be experimenting with. I had some succes with my writing today. I had an assignment back from my tutor telling me that it was excellent work, that I am improving and developing and I am now ready to begin submitting work for publication.

William is still well, although he managed to fall badly and get a very nasty cut on his chin yesterday. Luckily, we are pretty skilled at using steri-strips as we use them to secure his Hickman Line. His chin didn't bleed much but we did realise at bedtime that it was rather gaping. We did wonder if we should take him for stitches but agreed it was not bleeding and it would be so traumatic for William that it would be better for him to have a wider scar. Paul did a very good job of mending him. The girls are also on good form. We have Hope's French exchange student here in a week and a half. It is important to me that we all carry on as usual and Hope and Ellie don't miss out on things but I do wonder what on earth we'll do if we are called for transplant or have to rush William into hospital. We will have contingencies but it would certainly make for an experience for the poor girl to be woken in the middle of the night and bundled off to a friend's with the girls!

My Journey With William: An Exploration

I am working, honest guv!! I am taking a lunch break from trying to sort out the little bits and pieces of missing information for the year end accounts for the Charity Commission and writing my director's report for the next trustee meeting.

Whilst taking a break, I have started my creative experimentation on my new, companion blog 'My Journey With William: An Exploration' Please do take a look and share it with anyone else who you think could be interested or offer some interesting comments and criticisms. You never know what you may find there. I am experimenting with photography, writing - fiction and non fiction and all kinds of genres, drawing... Over time, you will find all of these things there. The blog is my virtual sketchbook, a dynamic sketchbook that people can interact with. Of course, I also have my paper notebooks and sketchbooks - many of them. I have always dabbled with stuff but the 'Transplant' project has inspired me to try and make something of it all.

I want to do it all at a much higher level too, hence doing little courses in writing and theology and working through 'learn to draw' books. I am thinking of adding in a distance learning photographt course. You can find all sorts of good value courses, many subsidised for people in our situation. Paul and the girls role their eyes when I come up with the next idea and it must all seem very 'bitty' to them. It isn't though. I am gathering skills that, I hope, will lead me into pastures new in our new post-transplant life. I am doing exactly what these kind of courses are for, developing myself for the future. William won't be so dependent on me then and I need to create something out of our experiences that I can develop. I want to write, non-fiction and fiction, I want to develop a Christian ministry based on what we have been through, I want to create art. All these things are nothing more than exploration at the moment. One or more may take off or they may all take off in a complimentary way. Nothing may take off at all but I will have had a lot of fun and learned a lot about myself in experimenting.

The start of things new

William went to school with our lovely Sue, his personal health care assistant, today so, for the first time since he was born, I had a free day to myself! I say free day, but, of course, I have work to do but it was nice to be able to get my head down in peace and quiet and get on. This is really exciting for me, the start of a new phase in life when I can get some hours in the day back to give my full attention to things I should be doing and have time to do some things I want to do.

Before getting down to work, I had my first hair cut in over a year! The pictures are not great, or flattering. Paul has only just come home so it is late and our nice soft and homely lighting is less than ideal. My attempts to do a self-portrait at arms length resulted in me being blinded by the flash and looking asleep (which is not far off what I look like in these in any case) and the girls tend to chop part of your head off, not ideal when showing off a new hair do. It would have been better to take some tomorrow, outside in the sunlight but I am sure my hair will not look as sleek and professionaly straightened after a night asleep on it. The girls were most impressed with the new look. Paul has bee typically uncommital. William didn't even seem to notice.

Having had my hair chopped, I caught up a bit with Brompton Fountain work and sent a submission off for the writing course I am chugging along with. I am still on the non-fiction bit and am doing and submitting bits and bobs anyway so being very slow with the assignments. I am looking forward to getting to the fiction part but am only too aware that freelance features and articles will be the bread and butter work as I try and build something that could resemble a career in writing.

Last night, I watched the 'Transplant' DVD that accompanies the installation. This has a lot more on it than selected for the installation itself. I am now reading through the book and managed to some time today to reflect on this and think about some creative work I could do in response to it. I take loads of photos and never leave the house without my camera. I know I could use this medium to record our life in a different way to the obvious snapshots I take. I also want to write in different ways than the straight forward diary writing that I use in this blog. I am going to experiment and am going to share the results in another blog, a companion to this one. This way, I hope that people will look and read and offer criticisms and comments that will help me shape my work. So, watch this space...for a shiny new blog linked to this one. I hope to have something up as a starting point on Wednesday.

A little note - My laptop died last week and my saved emails and addresses with it. If you haven't heard from me for a while, could you please email me so I have your address again.

'Transplant'

On Sunday, Hope and I went to see a piece of installation art called 'Transplant. This was the result of two artists, a photographer and a sound artist, being resident on the transplant ward at Harefield Hospital. Their aim was to capture the experience of those undergoing mainly heart and some lung transplants during that time. With one of the artists being a sound engineer, auditory perception was a key theme and central to the patient's experiences was the idea of having sensory deprivation, having to remain in their rooms, at the same time as sensory over stimulation, on hearing all the call bells and alarms from the rooms surrounding them. The exhibition took the form of large portrait photographs, each with a short sound track of their voices telling us something about their experience or recordings of sounds that they would have heard around them during their time on the ward after their transplant. The soundbites came out suddenly with silence between them. It was a bit eery and un-nerving in many ways. It was very powerful. Hope had never been to anything like that before and was very excited by it, if a little scared by it whilst in the room. It did have a very haunting quality. It was art to be involved in rather than to enjoy.

The experiences portrayed in the work were very interesting to me. With William being so young there is a lot he can't put into words and probably doesn't even think and feel. There was a theme of having to adjust psychologically to the new organs and learn to accept them as part of you, if you ever do! From my limited experience so far, children don't seem to question in this way - they just have their 'new tummy' and get on with it. I wonder if there comes a point later in life when they question and this psychological acceptance becomes an issue? I can relate to the simultaneous sensory deprivation and overload - I'm sure anyone who has lived in a hospital for any length of time can do so.

The installation was very simple and very complex all at the same time. It was accompanied by a book of essays written by the artists, patients and a psychologist who works with the patients to help them adapt to their transplants. The book also contains a DVD of all the photos, together with the sound recordings. I plan to spend some time looking at it all again and reading the book over the next week or so. I am sure this work will be the subject of more blog entries as I explore it further. There is a fascinating month by month account of the development of the project over the year of residency (http://www.thetransplantlog.com/ )

Hope and I went onto the Tate Modern after visiting the installation. We came home with a bright green 'The Bigger Picture' eco bag full of pencils (and a rubber), sketch books and a couple of books on creativity and techniques. We also came home with a huge amount of inspiration. I write about it avidly, on here and in diaries and journals. I am now exploring other ways to record my experiences and emotions using photography (in a more artistic way, as well as the kind of photos I take and put on here), drawing, painting and writing and putting it all together in a more 'multi media' kind of journal. I am not the best skilled at art but I have always been creative. I have long felt a real need to create something out of this and feel this even more after experiencing this piece of art at the weekend.

First day at school

William started school today! My little baby now at school. When the girls started I felt really old. Today, to be honest, the main thing I am feeling is how much I am looking forward to my day times and being able to get on with my work and my theology and vocation course without feeling guilty that I am not giving William enough attention. It will be lovely to have time to give every different ball that I am juggling some decent quality time. Daytime for work, after school for the children and evenings to finish work and relax - weekend as family times! I suppose I could also have felt relief that William has made school age as there have been people who didn't think he would. I don't feel this as, apart from some very scary line infections, I have never doubted that he would still be here. Indeed, now I feel more hope that he will be here a whole lot longer with the transplant.

William loved his morning at school. We were picked up by 'T' who will be his personal taxi driver! William was a bit overwhelmed by the prospect of school so comforted himself a bit with 'blankie' on the way but it had to go in the bag when he got there. In the classroom, William enjoyed drawing 'a boy sleeping on the moon' on the table (paper was stuck all over it). The teacher asked him what a little bit was with two circles aligning each other - William considered for a while and then declared it was his bottom! We had to agree, it looked like one. William read a whole book to the teacher and I. She was so impressed she said he will join a mixed age primary school reading group as he is so advance for his age with reading. William wants to read and is easy to teach. With all he goes through, books are a valuable source of entertainment and distraction for him. After reading, he made up a story of his own about a fire engine who got stuck in the sand. It was then outside playtime. They have a lovely play area. William picked a tomato to smell at snack time afterwards. We then sang songs and William did the weather board. William found one of his favourite library books in the classroom 'honey biscuits' a lovely story about a child making honey biscuits with her grandma and where all the ingredients come from. He shared it with his teacher so you can guess what he convinced her to do with him tomorrow! There was just time for some playdough and starting a maths game before we had to see the nurse to show her William's lines, illeostomy and gastro-jejenal tube. Our gastro nurse specialist is at the school this afternoon to teach them all about line safety, his pump and TPN etc. We have had to adjust his times so William is on TPN all day at school to make things a bit safer than flushing him off there. It was then home time.

William did so well on his first day that he will be going in full time from Thursday. I am in with him this week before our lovely Sue takes over next week. William's current school is a special needs school because he is pretty high need with all he comes with right now. After his transplant we will sit down and discuss whether he will remain there or go to mainstream school with Sue. Talking of 'transplant' the art installation was very interesting. I will talk about that tomorrow.

The Parish Show

Yesterday was our Parish Show. There were a few 'Diblyesque' moments that made me chuckle throughout the day. It is certainly a day that a lot of people take very seriously. I can't begin to imagine the hours some people must have put into growing their crops, baking several cake in the days leading up to the show and making jams and preserves. A good few people won a handful of classes each.

We don't have the luxury of a huge amount of time, or an organised life and Friday's blog tells of what our days were like leading up to the show - not much space for proper preparation. None the less, we had a successful day. I helped Ellie make some mueili bars while Paul was putting William to bed on Friday. We also put finishing touches to bookmarks. Hope was up late making pizza on Friday evening - she actually deserved a prize for tidying up after herself too. William and I woke early and he made his chocolate chip muffins for the show, for breakfast and for him to smell. He did it all himself too with only a bit of help weighing and measuring. While they were cooking, I arranged some home grown flowers (I had to change class from mixed flowers to one as there was not much left!) with some home grown greenary into a vase and made a 'flower arrangement in an egg cup'. Then, Ellie and I went to exhibit our items.

We returned later to be congratulated on our success. As we wandered around we discovered that Ellie had two first prizes for her bookmark and her museili bars. William had second for both his muffins and his bookmark (not second to his sister, who was in the older age group class), Hope had come second to her pizza (to the vicar's son and she is already preparing her rematch next year) and I had come second with our flowers and third with my egg cup arrangement. I was pleased as I have never done anything like that before. I also got a 'highly commended' for some knitting. I have taken up knitting as a stress relief in hospital. I was doing something patterned but had to start again every time someone disturbed me so ended up doing the plain option. I entered it still on my needles with a note saying 'my new found stress reliever - ongoing!' I won the commendation for giving the judges a laugh!

The children were awarded a lovely collection of prizes, all relevant to the class they had won and I was awarded with certificates. Afterwards, we all bid on the produce in a charity auction. We bought some jams, a violet and apples and have the prize winning marrow - large enough for a couple of stuffed marrow meals this week. As soon as we got home William was back on his bouncy tiger investigating his winnings.

Hope and I are off now to an art installation organised by Royal Brompton and Harefield Arts. It is entitled 'Transplant' and the result two artisits in residence for a year taking photos and talking to patients. Look out for more on this later in the week as tomorrow's entry will be taken up with William's first day at school!

I am Prince William and I live in a bouncy castle...

I have had one of the most trying days of my recent life and I was all set to blog about how Wills and I travelled into London for his vaccination, except it was only ordered this morning and wasn't in stock, and neither was the alternative, and then I locked myself out in the afternoon school run so I and William's nurse and Sue, his one to one, who were here for a meeting with me about school next week were locked out and had to meet in the park (at least it was sunny).... I would have been bloggin about a frustrating and traumatic day for Wills and I but, instead, I have some happy pictures of 'Prince William who lives in a bouncy castle' to share with you.


I had an email a few days ago from Viks at postpals to say they may be able to get some 'bouncy tiggers' and would we like one. My sensible head told me we have no space but Paul and my spontaneous side knew Wills would love one. He rarely gets the chance to bounce at fetes and parties etc because he is usually on his TPN and it is too risky to be bouncing with other children. Now he is on TPN until 4.30pm it is even less likely he will get the chance to play on bouncy castles while we are out and when he is in isolation after his transplant he certainly won't be able to play with lots of other children for a while. He does have a lot of fun on them so we said yes please. Yesterday, I got a mail saying it was waiting for us at our local Woolworths. We went to pick it up after our trip to the hospital. We had half an hour home before getting Ellie from school when I set about trying to blow it up with my bike track pump - after half an hour it still looked like I hadn't even started! Luckily, the toy shop at the end of the road still had some electric pumps (everyone else only stocks them in the summer) and Paul blew it up with that while I was still talking about William's medical needs in school - after Paul had returned home, early thankfully, with a key to let us all in! William was on it before Paul had even finished and soon delcared he was 'King William and he lives in his bouncy castle' (what ever the bouncy item - it always seems to be a bouncy castle to children - this is a bouncy castle that looks like a tiger apparently!). Well, Prince William played in his castle all the time until we managed to drag him out and to bed. He was able to bounce and fall and then relax and rest when he needed to. It is fantastic. Thank-you SO much Post Pals - William has a huge smile today!! It does take up the whole living room, and that is without it's tonge and mouth - a mini slide into a paddling/ball pool! We will save those features for another day. Paul and I are relaxing around it this evening as it is up for the weekend. We will put it up for the day whenever Wills feels like being 'Prince William' or having a bouncy day, or whenever he needs a bit of extra fun.


William also had a lovely Thomas activity book and an ocean colouring book and stickers from HT and, rather appropriately, someone also known as Tigger! He got on with looking at them and doing some colouring while he was relaxing in his castle. Thank-you!! What would have been a traumatic and frustrating day for William turned out to be a real play day!

I have blogged about Postpals before and how fantastic it is. I have added it as a link from my blog now (as I am getting clever and can do this kind of thing all by myself!). Please do have a look and help post smiles on faces like William's, and Seren and Dylan's - see Rebecca's blog 'Life as Mum to 2 Children with Cystic Fibrosis' in my 'blogs I read' section - see, I really am getting clever!

Meanwhile, Ellie and I made museili bars and Hope made pizza (from scratch, all by herself - and made a decent job of tidying up and cleaning afterwards!) in readiness for tomorrow's Parish Show. Prince William was too busy in his castle to make his chocolate chip muffins but will do them in the morning when I also need to do some flower arranging. It is so nice to be home joining in with the show tomorrow. Wills is not all that well and we acknowledged at the hospital today that we are probably living on borrowed time right now before he gets his next line infection. Let's hope that borrowed time lasts a few more weeks!

Sorting myself out

I have been focusing on myself a bit and doing some much needed 'sorting myself out' over the last couple of days.

There has been a lot in the news lately about carers struggling to look after their own health. I have found this to be very true for me. Those who have known me for a while will know that I have my own health issues, namely diabetes and brittle asthma. It is very tricky fitting in appointments for me and they often get cancelled because we are back in hospital again. I had cancelled my diabetes checks loads of times and, when I eventually got to go for my annual blood tests, I had to cancel the follow up. I haven't been able to fit in hospital appointments so am managed by my GP these days. We have a few 'traditional' receptionists at our doctors, you know, the ones who seem to think their job is to protect the doctors from their patients! The last time I spoke to one I was told that I could not have any more mediations until I had seen the doctor. This attitude was maintained even when I explained that I was stuck in hospital and about to go to Birmingham and could not get to the doctor!!! I got one last prescription by stating clearly that I was on life saving medication and was being told I could not have it! Yesterday, I finally had the chance to get to the doctor when Wills was with his nurse. The good news is I have perfect blood sugar and a perfect BMI (although a less than perfect height - I was sure I was 5'3"but I am, in fact, only just 5'2 when standing very straight and tall!). My diabetes is OK too. I knew I was huffing and puffing a bit lately and the idea of running anywhere seems a very distant memory. So, I wasn't too surprised to know my asthma is a little ropey. My peak flow (a measure of measuring asthma) was very wimpy. The first is always rubbish but I couldn't blow the dial much further on than 150 on any other attempt either - and I blew my absolute hardest! I think 160 was my best. I can blow 270 on a very good day so that wasn't the best news but did explain a lot. I am now on extra steroids, more oxygen at night and a new inhaler on top of my usual 2 and 'theophyline' tablets. I am glad I went now. A bit of self TLC is needed for a while. (note to Mum - I am fine, no need to worry at all, I just need to remember I have this condition for a while!).

So, with my health sorted out, today I set to sort out my life a bit. William starts school on Monday. I have to go with him for the first week but, after that he will have a one-to-one at school (our lovely Sue, who has been working with William for a while now and is virtually family!). So, when he is well and at school, I will have school hours to myself. I have my job at The Brompton Fountain (I will come back to that) but it is only part-time and not enough to guarantee my future solvency on its own. I am doing my theology and vocation course and am always working hard to develop my career as a writer. That is all plenty to be getting on with but it is all done alone from home so a bit isolating. I decided today to do a course once a week to get out of the house and meet some new people. With most of the courses starting in the next week or so, I have left it rather late and there wasn't much left. I was torn between an arty, crafty course just for fun or a writing one. I decided to do some writing as I really have a lot to do right now and it isn't the time to add in a new hobby, fun though it would have been. A freelance journalism course was all I could find to fit the school day and William's regular hospital appointments. I wanted a creative writing course but this will be good and may help me make some more money from my writing to keep me going while I write that 'best seller!'. The course is the middle of London at Covent Garden, from 10.30-12.30 so I will even have time to 'do lunch' and/or visit a gallery or museum before rushing home for the children. I am going to cherish that day each week.

Work at The Brompton Fountain is going well. We have been struggling in the current economic climate and I have been worried about our future. I thought hard and prayed about it all. Almost immediately, I had some offers of help with writing grant applications and some fantastic fundraising news. One girl raised two thousand pounds at Sunday's Women's 5K at Hyde Park and there are several others who are still counting up their sponsor money. I was also contacted by a wonderful runner who wants to work with us and raise money running marathons next year. He wants to see what we are doing and how the money will be spent. I am so chuffed about that. I can't relax and have to keep working hard at the fundraising but I am more confident we can ride the current economic storm. We had a training session for our up and coming sibling day yesterday and several of the hospital staff are getting involved with us though that. Things are looking good.

Wow, I have blogged all this with no mention of Wills and how he is doing. He is doing OK. We bought a Thomas lunch box today for him to take some food to school to smell at lunch time. He was very chuffed with that. He has another vaccination tomorrow, which he will be less chuffed with. He has a lot of extras now he is on the transplant list.

The girls are OK too. All is settling down again.

The impact of the last twelve months

There has been a lot in the news over the weekend about transplants. I have printed off several articles to read and digest over the coming week. I'm sure there will be a lot more about it here as I read and reflect. I am new to the world of transplants and have some catching up to do. What I do know is that any advances that have the potential to help those on the transplant waiting lists get their organs as quickly as possible has got to be a good thing. The pictures above reflect this. On Saturday, we had our annual family fun day put on by the community nursing team. We always enjoy this day. In the past, William has had a fantastic time joining in with all the activities, especially the music session at the end of the day. The picture on the top shows him last year getting really excited playing his maraca and really enjoying the music. The picture on the bottom is this year. William spent almost the whole day on our knees cuddling with his 'blankie'. He enjoyed brief bursts playing in the Thomas ball pond and making a card with stickers but they really were very brief. He had no interest what so ever in the ceramic painting or the music - both things he loved last year. He didn't even run around when he was off his TPN. He just doesn't seem to have sustained energy these days and Paul and I have seen that as a steady decline over the last year. The picture of him watching all the other children looking pale and tired with his discarded maraca on the floor says it all. When I picked him up, he just snuggled up and told me (for the upteenth time) 'I'm tired, I want to go home' That isn't the William we used to have.

One of the surgeons at Chelsea and Westminster told me that the day we went onto the transplant list was the day we got our ticket. It is a ticket for a journey. We haven't begun that journey yet - that begins the day we get the call and William goes into the operating theatre to get his new bowel. Before we were accepted for transplant we had no ticket to anywhere. We now have our ticket firmly in out hand. What we don't know is where that ticket is going to take us. It will be a very long journey and some of the ground we cover will be tricky. I hope the journey leads us to a day when William is, once again, runnig around, joining in and enjoying all of his life to the full. That is the new life that he will receive and that is the gift that our wonderful donor family will be giving us. William has a wonderful spark and it is still there for all to see, he just struggles to sustain its shine at the moment.

To finish, I am going to borrow another image from the lovely Emily's blog (now listed on the right (this is mu life and I choose to love it) as I have found the gadgets at last! ) Emily talks today about a lovely service she went to over the weekend where donors were remembered. The lit a candle and from it lit six candles that were placed in a circle all around. The first candle was then blown out leaving the six shining. What a fantastic image!

Finally sleeping (and waking!) in my own bed

There is nothing more cosy than being at home when it is dark and wet outside! We are finally home!!! We came home on Wednesday. It is lovely to be back with the girls. William is OK bit not his usual self. He was better at the start of the week so we fear he has peaked. We are enjoying every minute at home in case it doesn't last but we are hopeful we will be here for a few weeks at least! William is having antibiotics 'locked' in his line when we stop the TPN at the moment so, hopefully, if he is feeling a bit yukky from the bugs building up in his gut again now his antibiotic treatment is finished, his line should stay clear for a while.

I made a list of all the things I miss in hospital. The girls were top of course and next came; freedom away from asking permission to leave a locked ward, singing out loud, playing loud music, my bed and all my 'stuff'. I have been enjoying all of that over the last couple of days. It does feel a bit strange going about normal things like school runs and shopping with the phone safely in my pocket, knowing we could be called at any time. We are getting on with things but hoping to get that call soon as we can see that William seems to pick up less and less after these infections. He is fine but he seems to stay a little more lethargic and pale each time. It does seem harder for him to beat the bugs too as we are in hospital longer each time.

I am getting used to the transplant now and 'white nights' are less of a problem at home. However, a new problem for me seems to be waking several times in the early hours. I think it is similar to how you sleep lightly and wake a lot when you know you have to get up really early. Subconsciously, your mind stops you from sleeping too deeply so you hear the alarm. I think my mind is stopping me sleep too deeply to make sure I hear the phone should it ring. In hospital, I knew a nurse would come and shake me if necessary. I'm sure it will pass and, anyway, we were assured we would be roused if we had the call. I think they send the police round if all else fails! With my moblie and home phone on my bedside table, I'm sure that wouldn't be necessary!

Home Tomorrow!!!

Yipee!!! We are going home tomorrow!!! We have been here 6 weeks. We were supposed to be here for just a week prior to the transplant assessment. However, we found Wills had a bug in his line when we got here. We went to Birmingham with the same bug and came back with it, and a friend in there too. We have now got the lovely new line and a week of IV antibiotics since the old was came out has cleaned up the bugs floating around William's blood stream. They are still in his gut though and it will only be a matter of time before they have leaked and found their way to a new home in his nice and TPN fed Hickman line. The only 'cure' for this situation is William's transplant and, of course, finding him a suitable organ could take months or even a year. So, desperate times call for desperate measures and we are experimenting. William stops his IV antibiotics tomorrow and will go onto course of 'line locks'. This will be a strong solution of an antibiotic put into his line when his TPN is taken down and left there to clean up any bugs that have decided to creep in. We can only do this for a week as the antibiotic is a treatment one and we don't want to cause any resistent bugs. During the next week, the team here are planning to research a different line lock that has been used in Southampton and Birmingham. This is a different kind of drug and could be used more long term. The trouble is, it has been used mainly in adult renal patients, not children but, as I said, desperate times... We just need to keep William well for as much of the time as possible until he has his transplant.

Talking of the transplant, I spoke too soon in Sunday's blog. Last night was one of the worse 'white nights' ever and today, for some reason, I have jumped out of my skin everytime the phone rang with an unfamiliar or 'witheld' number. I guess there will be days when it is easy to get on with life and forget about the waiting list and days when that is a lot harder to do. There doesn't seem to be any rhyme or reason as to what each day will be.

At least, we will be home together for a while. The girls spent the day up here yesterday and we went for lunch in a pancake restaurant. I have always been intrigued by this place but it is a bit pricey, However, Monday is 'Monday Madness' with all pancakes at £5 each. It was an exciting treat for the girls as it was a novelty and the plates were HUGE. William's favourite treat at the moment is having a bread roll to smell so we got him one on the way. He was very content with it while we were eating. For me, my curiosity was satisfied but it won't be added to my favourite little places for a treat around here. Although, I tried a savoury pancake and the idea of a late Monday breakfast of a sweet pancake and a coffee all on my own sounds worthy of a return visit. I will add that to my 'idle pleasures' list for next time we are back at our Chelsea Pad. Wills is at school on the hospital now so an hour on my own on a Monday morning will not be challenging to find. It is always good to have something to look forward to when we are faced with more time in hospital.

New line and noisy spiders

We have now been on the active transplant list for 3 days. What I am most suprised about is how quickly I have been able to stop thinking about it all 24/7 and get on with life without constantly thinking we might get that call. On an earlier blog, I likened it to pregnancy and commented that I felt that the transplant would be there at the back of my mind the whole time but that it would stop dominating my thoughts as it was initially. I was right about that. It is at the back of my mind the whole time but in a controllable little spot there - most of the time! The 'white nights' are getting better too.

William now has a lovely new Hickman Line and I am hoping we will be home soon. We have been told to plan to the end of the week but I do hope we get out earlier than that. Hope and Ellie are now home and starting school in the next few days. I spent the afternoon with them yesterday and it was so so lovely to see them. I hate coming back to the hospital from home. We cooked dinner and watched 'The X-Factor' together. If anyone watched they will remember the scary 'holistic vocal coach'. I was unravelling a jumper I made a few years ago so I can re-use the wool (it is VERY heavy wool and a polo neck - far to hot to ever wear). The wool is multi coloured and 2-ply 'biggy wool' and Ellie had fun pulling the cream bits out, making 'hair extensions' and screeching at me. We were having a lovely time and it felt that William should have been upstairs snoozing.

Paul's Mum is now staying with the girls. The house is in a dreadful state - there is no way Paul has cleaned in the last 6 weeks and there are bags and piles everywhere. It is pretty embarrasing. The trouble is, we never seem to get the chance to unpack and sort out before we are back in hospital again and the half unpacked bags and unsorted piles just accumulate. I am going to attack it room by room over the next few weeks and be totally ruthless. Then, I am going to pay for one of these cleaning companies that put leaflets through the door to do a 'deep clean'. I started a bit in my bedroom yesterday - although only got as far as at least leaving the unpacked bags in a tidy row (Paul's side still has clothes and stuff all over the floor!) The trouble with a sort out at this time of year is that it is 'spider season'!! I found 2 in the half hour or so I had to tidy before the girls came home. Both were huge - one so big I could hear it in the carrier bag it was in before it scuttled away. I know I will find it again when I get to work on the bedroom. I aim to attack the clutter and junk in small chunks, an hour of it everyday. I hope at least half our stuff will be in the bin, charity shop or sold on E-bay by Christmas.

Talking of charity shops, today's 'idle pleasure' was 'Charity Shop ESP' The idea is to imagine a book you really want to find in in a charity shop and go in and expect it to be there - it wasn't but it was fun! William wanted Thomas books and they weren't there either. So, we went on to Waterstones where we both spent more time enjoying 'idle pleasure' - and more money that I really can't afford. Buying books always seems so worthwhile and virtous that it never seems wrong, especially when I am really determined that I AM going to make it as a writer. Buying books is research so a necessity. I hope I get more success with the Charity Shop ESP or I will have spent any money I am likely to be paid before I even earn any.

Fabric Softeners

Ah Em, I remember reading the 'white nights' blogs. Yep, it is white night city here. I always like to fall asleep with something in the background - thank goodness for snooze settings! It doesn't seem to stop the mind wondering at the moment. I will go back and read those entries in your blog for some hints and techniques.

Becky - fabric softners - I like it! I have completely adopted the washing machine analogy. I hope the originator won't mind - I am open where it came from at least! So, what are my fabric softeners? Novels, chocolate, nice baths are all the obvious ones. This is not the time in my life to deny myself little treats and luxuries, although this is the days of the credit crunch and I, like everyone else, have to keep to a budget. Thank God for charity shops. I picked up a lovely 'pick me up' top from the one down the road. Being Chelsea it is full of designer labels and clothes I would never even see in shops, let alone buy! Knitting is a big softener, especially with nice, luxerious wool. I have packed some chunky wooden needles, free with a magazine, a pattern for a shawl/scarf from the same mag and some multi coloured wool from the John Lewis sale into my transplant bag. Of course, I am lucy enough to have my faith and prayer is the biggest softener of them all.

Bookshops are a big fabric softner for me. I love them. Just being in them, the smell and the calmness. Unfortunately, it is not good for me to spend too much time in them as buying books seems to be the most easily justifyable way to spend money you don't have. Lately, I have been scouring book shops for books that will help me through the next few months and our transplant journey. Of course, there are not too many 'coping with your child's transplant' books out there! However, I think I have found the book I need. I was drawn to a hardback book in a vintage Ladybird style called 'The Book of Idle Pleasures' by Dan Kieran and Tom Hodgkinson. It is filled with 100 ideas of passing time with free and relaxing activities. Each double page is dedicated to one and has a whimsical little description and picture plate I am going to do one each day, some of them with the children and/or Paul and some alone. Today it was "reading Edward Lear out loud to children' I bought the Lear book at the same time as I found the page while flicking through in the shop. We did have some fun. William laughed and laughed at the alphabet rhymes. This will be something to repeat. I think Lear will have to come with us when we get that call. Speaking of which, we are on the list in an hour and a half from the time of writing this - so we are probably fully up and waiting when you come to read (apart, of course, from the few hours tomorrow afternoon when William will have to be deactivated almost as soon as activated as he will be in theatre getting his new hickman line).

Days full of optimism and nights of fear

William's infected hickman line is now out and we are hoping to get a new one in on Friday. He has been existing on IV fluids only since Saturday so we really hope the new one goes in OK on Friday. Hope and Ellie are coming home the next day and I was hoping we would be able to come home too. Unfortunately, they want to make sure the new line gets as good a chance as possible not to become immediately reinfected by William's gut bugs, as has happened on many previous occasions, so we have to stay in for another week of IV antibiotics. This is heartbreaking. I haven't seen the girls since the last week in July and was really looking forward to us all being together again. I will see the girls on Saturday but Paul has the end of the Glynebourne Festival and is away singing at a funeral for part of next week and Mum and Dad are away so the poor girls will have a week of 'box and cox' arrangements to start their term. I wanted to do the IVs at home but the team are not happy for us to treat the end of William's infections at home any more. I am so upset about it but I know the team here have to do what they have to do to give William the best chance of staying well enough to be on the transplant list as much as possible. He has to be de-activated when he is poorly with infection. Everyone is hoping he gets his call soon as these infections are just coming all the time now.

William is listed for transplant the day after tomorrow and it is really beginning to hit home and feel real. The bag is packed abd Hope and Ellie's overnight bags are waiting on their beds. The lists are written and people have kindly offered to be part of contingency plans for the girls. During the day time, the transplant seems a very positive thing, not least as all the staff here keep on saying that he really needs it and we hope a donor is found soon and also that he should do really well. It is very easy to feel optimistic about things during the day. The terror of what could happen if he doesn't do well engulfs me at night as I am trying to sleep. It seems to be an occupant of the darkness and the time between being awake and asleep. It is only natural to feel worried about such a huge operation with life long implications. I'm sure I will get used to this 'life in the washing machine' and emotions will even out as I do so. In the meantime, a nice mug of hot choc (even better if after a glass of wine) and a feel good novel seem to be the best strategies for bed time.

Looking forward to 2012

I have been glued to my TV over the last few weeks as often as I could. I have loved the Olympics. It has been a very welcome distraction from everything. I watched the closing ceremony and hand over today with much excitement. I am so looking forward to the games coming to London and totally plan to make the best of it and take the children to see some of the events.

I have always been a bit emotional at things on TV and I must confess to blubbing a bit oday twhen the flame was extinguished. I also found myself reflecting on the last sixteen days and the next four years. I caught bits of the opening ceremony on the ward in Birmingham and watched bits of the games in my hotel room. I had no idea what the outcome of William's assessment would be. The last sixteen days have seen us receive the recommendation that William joins the list of children waiting for a small bowel transplant. It has also seen us battling with bugs in his line, reaffirming the fact that the transplant really is William's best chance now. I haven't seen the girls in all of the last 16 days and miss them terribly. As I looked forward to the games coming to London I found myself thinking of how things could be for us. Without the chance of transplant, it is unlikely William would fit into our plans for the Olympics. Now, we can look forward to the possibility that our eight year old son will be able to enjoy going to see some of the action, free of his TPN lines and able to stay out for a long day without having to rush back for TPN. He may even be inspired to join in himself in the annual transplant games where teams from transplant hospital compete against each other. There is so much to look forward to. I couldn't think about all of that without thinking about the other family who will be involved in William's transplant.

Having snapped out of the emotional and reflective mood I decided that, as we are in London, we should stop watching TV and get out and join in so we put his IV fluid through his pump (he is not on TPN at the moment because his temperature went up again yesterday and he was pretty poorly so it is IV fluids only with a plan to take his line out on Tuesday and a new one in on Friday) and walked to Hyde Park, though all the crowds along the Harrods stretch. We got to Hyde Park corner in time to see the Red Arrows roar over with all their red, white and blue smoke. William was so excited. Another thing to add to our list of things to when we are off TPN - a day at an airshow. That would be a good place to have a picnic!

Washing machines

That lady who described waiting for a transplant as like being in a washing machine really had a great metaphor. She is so right, it isn't a rollercoaster whereby ups are followed by downs, it really is every emotion coming at you at once. Today is a very sad day as we heard that a little boy who we heard of at Birmingham died yesterday following complications arising from his third small bowel and liver transplant. I feel so much for his family and can't help but feel a pang of panic at the same time. William still has his line infection and is very up and down at the moment. The team here are pleased he has a potential transplant on the horizon and see it as a very positive thing for him. We know so many stories of transplants with very happy endings. All this information is there in your mind, filling it with worry, if not terror and hope and optimism all at the same time. It is exhausing! I am keeping my mind occupied with the practical preparations for next Friday when we go live on the transplant list. The girls' bags are now packed and I have nearly all I need for mine and William's. William's clothes need washing and packing and I need a few more bits and pieces and we will be ready. I feel so much better when I am organising things as if feels like there is something I can do about all this.

Of course, the rest of life goes on too. I have managed to get some work done today as well - both Brompton Fountain work and an assignment for my theology course. I am very fed up with being in hospital now and so hope we can get shot of William's line bugs and get him home so we can be together as a family.

Taling of washing machines, the one here is broken! A broken washing machine on a ward where gastro children are treated is far from ideal. I spent ages yesterday trying to wash the yellow and green stains from William's clothes. I hope we are home in time for me to wash William's clothes for the transplant bag or I will have to rely on Paul finding the time in his hectic Glyndebourne end of term schedule of last shows and parties.

Like being pregnant again

All that has happened over the last couple of weeks are now sinking in. Paul and I went out for a meal together yesterday to chat things through and discuss what now needs planning. It was nice to relax together over a bottle of wine too. I think I needed it as I slept soundly (depsite wanting to catch some of the olympic marathon) and felt really sleepy all day.

Today, I began to think of the practicalities of William being live on the transplant list in 12 days time. Today, was a day of lists. Lists of things to pack in the bag, lists of who to ask if they are willing to be called at 2am to get the girls if necessary, lists of who could be asked to pick them up from school at a moments notice if necessary, lists of phone numbers and addresses to tell when we get the call.... This afternoon, I popped to John Lewis and good old M and S for some button up PJs for Wills to wear when he is still attached to lots of drips and drains and some cheap and cheeful soft shorts and big and baggy T-shirts - all 3 sizes above his current size to allow for him growing on the list and for his sore and swollen tummy. These will all be packed in the 'transplant bag' along with some clothes for me, a few things for William to do while waiting to go to theatre, a good read and some knitting for me. The last two weeks showed me that a good quality light read and a knitting project with nice soft wool are the best ways for me to relax during stressful times in hospital. There are plenty of shops a short walk from the hospital - we have already noted the bookshops, nice sandwich shops, coffee shops, a fantastic sweet shop where you can buy all your childhood favourites and Hotel Chocolate!

I am now working my way through all the literature again to remind myself of everything, especially the waiting period - I'm sure I will then write another list! All my lists are in my new mini filofax that, along side my phone, will never leave my side.

To me, this all feels a lot like being pregnant again. At the moment, I am thinking about it nearly all the time, searching for every bit of info (including finding myself scouring the shelves in the bookshop, just in cast there should be a title on seeing your family through your child's transplant) and wanting to prepare for it all. I can imagine, the next weeks and months will proceed very much like a pregnancy with the transplant taking a spot at the back of my mind but always being there in my active thoughts, just as I found my baby was throughout all my pregnancies. The anticipated end is not at all unlike pregnancy too - a new life. That's what it will be for William and for us all. I can't help myself daydreaming about picnics and parties with William running around free of lines and eating, staying with Mum and Dad with the whole family, camping holidays, long days out with no rush home for TPN, visiting friends without having to leave after a few hours to get home in time to get TPN from the fridge. Best of all is the thought of being at home with the girls and being a proper family together rather then being seperated while we are hospital all the time. Of course, being able to live without the fear of losing Wills to these horrible line infections!

Day 10 - decisions!

It has been a tense and exhausting day! The team met at 8 for the weekly transplant meeting. This was the meeting where William's recommendation would be discussed. I didn't sleep overly well last night and, strangely, I was woken at 5am with the sound of William grinding his teeth. He was lying wide awake staring at the celing - perhaps he was picking up on the mood.

I tried to eat breakfast this morning but it just glued itself to my throat as I tried to swallow it. The transplant meeting continued on into the weekly ward round so I hadn't heard anything when the transplant co-ordinator turned up. She told me the outcome of the meeting - the team had decided to recommend that William be accepted onto the list for small bowel transplant! The rest of the day has been a bit of a blur. I listened to the transplant co-ordinator and gave her heaps of mobile numbers. I was itching to call Paul throughout the meeting. I took the opportunity to call afterwards to tell him what the decision was and make sure he was OK with it. When I got back to the ward, the liason nurse was already there waiting. He took me to another meeting room where the consultant was waiting to talk me through the recommendation and sign the consent forms. There was one for the operation, one for UK transplant for William's name to be on the register, one to consent to photography during the procedure and one to consent for William's bowel to be used for research.

In the midst of all this, I was busy packing to come back to London. William had his vaccinations just before we left. I finally calmed down enough in the car (at about 3.30) to eat a sandwich. It has been huge day. It hasn't all sunk in yet and I am pretty exhausted. There is lots more to say about the plans for William and I will expand on it all tomorrow. The big news is that we have been offered this amazing chance for William. We have a lot to go through ahead of us but there is now hope that we just haven't had for so long. It is a big relief. That term doesn't quite seem right but I can't think of a different one.

We are now back at Chelsea, in our usual spot. I have made it all cosy and now it is time for sleep.

Day 9 - Nearly There!!!

This evening, I can't eat and I very much doubt I will sleep much. Tomorrow morning at 8am the team will meet and discuss their recommendation following William's assessment for small bowel transplant.
I am about to write some bullet points for the liason nurse to read to represent our feelings. We have worked out some stats.
(To my best memory) William was in hospital with a line infection about 65% of the 12 months. With the home IVs as well, he was being treated for a line infection about 78% of the last 12 months. We have called an ambulance because he was septic and going blue 3 times in the last 12 months and there have been a couple of other times when we drove him to hospital and he became very poorly there. He also became very poorly once en route to Chelsea from Mayday. He has had two stays in the High Dependency unit because of line infection and has had at least 8 infected lines removed - I have lost count. We met the transplant surgeon today and he felt that this was grounds enough to list William for a small bowel transplant. He went into some detail as to how the operation would be done and the size of donor William could accept. I will blog more on this tomorrow, if the rest of the team agree with him. The liason nurse feels it is an appropriate time for William to be listed. I have no idea what anyone else thinks. I was asked if Paul could be reached tomorrow to give verbal consent to demonstrate we are both in agreement that we want William listed. He will add his written consent during the next 2 weeks William will have a few live vaccinations tomorrow (which are already prescibed and on the ward in case!) and can't be listed until they are out of his system. The surgeon was very positive about a transplant for William. Again, I will talk more about this tomorrow. It has been a huge fortnight. We have had a lot of information and Paul and I are both in agreement now that we want to accept a transplant for William if it is offered to us. All the tests and information are collected. It is all down to the last discussion. It is going to be a long night...

Day 8 - A very intense day

Paul was up today so we had 3 information sessions with the liason nurse so he could hear the main points. We also met with the consultant in charge of the transplant programme. William had the CT of his veins today. This was encouraging as they found there are more potential line sites than we thought. I hope this means we can get rid of his current infected line now and can't wait to get back to Chelsea so it can be sorted out. He was a lot better in himself today but still having little temperature spikes and it not totally himself.

With the knowledge that there are more line sites available, William's transplant assessment is much more open now. I find this very frustrating as we have heard so much about all the positive things of transplant for him and it now looks unlikely it will be offered to us. I don't understand why, if it all hinges on one test, this couldn't have been done in our local hospital or as a day case here. We have heard so much about how William's life could be transformed by a transplant that it seemed a risk worth taking. The results of his assessment are:
1. He does have intestinal failure and will remain totally TPN dependent for the foreseeable future. His proximal small bowel (the end closest to his somach) moves OK but seems not to absorb anything. Thee distal bowel, further along, has little or no peristalsis and is dilated. It is likely this section that is causing his almost incessant line infections.

2. His liver is cross but not irreversably damaged (yet to be confirmed by biopsy results)

3. He has lost some line sites but does have a few to use for TPN

4. He has a static neurological disorder, leading to a degree of physical disablity, but it is not degenerative.

5. He has recurrent line infections and has had a bug in his line throughout the assessment period.

The main indications for transplant are liver failure and line access. According to these, William could continue on TPN. However, some papers list recurrent line infections as an indication in their own right. This is our main concern, and the main concern of our team. We were told William needed a transplant assessment because he was still getting recurrent infections after his illeostomy and all attempts to feed him in the gut have failed. He could still be accepted for transplant on these grounds but it is not so clear cut. You need a crystal ball to predict if he will die of a line infection or could die of transplant complications. The consultant here did suggest that we could remove William's distal bowel to see if it reduced the infections. Paul and I don't want this though as it would be a huge operation, also involving moving his stoma, it would give him 'short gut syndrome' and it may not even help. He is going to talk to our consultant to see what she thinks and is going to then talk to the team on Friday to see if they think his frequency of infections is enough to recommend transplant. He did say that he is likely to need it sooner or later anyway as his liver is likely to fail eventually and he will then need liver and bowel. I strongly feel that the combination of organ failure and recurrent, life threatening infections is enough for him to be listed. Anyone who has seen their son, on more than one occasion, playing happily with his toys and lying on the floor blue with septecemia five minutes later would, surely, feel the same. Especially when infections with the potential to cause this, and so much worse, are occuring almost every month and it is taking several weeks or more to get over them. I know it is a huge operation with life long implications and a big risk but, on balance, I think it would be so much better for William to be listed for an isolated bowel now. It is a non win situation in many ways because if he isn't listed and we loose him to a line infection it is the wrong decision but if we do go for transplant and he doesn't make it it was the wrong desicion too. We really do need a crystal ball. Likewise though, if he has a transplant and does well it was the right decision. Things can only stay as they are if he is not listed. There is no wonder treatment to make his bowel work again and no realistic treatment to stop the infections that are making him so dangerously ill so often. It really feels like we have seen a way to at least give him a chance of a safer life but that the door is about to be closed on that possibility.

Day 7 - Line bugs and wasted organs

William started the day with his endoscopy and liver biopsy. They didn't see any varices which is good as it strongly suggests that his liver is not too damages and should recover if he could come off TPN. We do still need to wait for the liver biopsy. His liver enzymes are high in his blood and so there must be some degree of liver damage. The biopsy result will tell us if it is mild, moderate or severe. If severe, William will need a liver transplant.

Unfortunately, William was not too well for the rest of the day. His blood cultures yesterday showed that he still has the bug in his line and I think the procedure and infection combined took its toll a bit. He was hot, grumpy and floppy all day so we spent most of the time cuddling and snoozing together, watching incessant Thomas the Tank Engine. Not at all like William (apart from Thomas). William is now on 3 IV antibiotics. If he spikes temperatures any higher or if he becomes more unwell the line will have to come out. However, the team here have echoed Chelsea and Westminster in saying that they can't promise to keep William infection free anymore, that his gut seems to be leaking its contents into his blood and that a new line could become just as infected very quickly (as we have seen many times before). Surely this is reason enough for him to need the small bowel transplant. He can't keep on going like this indefinately!

In my information session today I learned about exactly what will happen to the donor and to us on the day we get that call if listed. I also learned that 'intestines' are not listed on the donor card or register and that intestinal transplantation does not currently have widespread awareness, even among medical staff. On average, there are 25 children donating organs each year. The current list for transplants involving intestines (including combined with liver) is less than half that. Intestines are being left behind when other organs are retrieved. If all 25 donors gave their organs, all children on the list for isolated bowel should receive an organ within a matter of a few months. In reality, children are dying on the list because of lack of awareness. If we are listed, I hope we can use our story to help alleviate this situation.

Things getting a lot heavier - transplant assessment day 6

This week's transplant assessment schedule is a lot scarier looking than last week's. The information sessions are now coming in thick and fast, at least once a day. William has an endoscopy and liver biopsies tomorrow to ascertain the extent of his 'liver disease' this is what they are calling it now. His liver is not too bad but he does have a level of disease. His blood tests have shown us that. His liver function tests are ok. The bilirubin levels are down now, following his antibiotic treatment for collengitis (infection) caused by his gall stones. However, all his liver enzymes are high, indicating that his liver cells are damaged and leaking enzymes into his blood. Tomorrow's tests will reveal whether or not his liver is sick enough to recover if he came off TPN following a small bowel transplant of whether it also needs transplanting. If he has varices (dilated veins) in his bowel or osephegus, or if his biopsies show advanced liver disease, he will need a liver transplant. On Wednesday, he will have a CT scan of his neck veins. The ultrasound showed his right side to be blocked by blood clots and his left side patent. However, William has dilated blood vessels all over his chest and tummy and the fear is that the main blood vessle the neck veins feed into is also blocked. If this is the case, his TPN is currently flowing through veins that are re-routed over his tummy, rather than a vein draining directly into his heart. The liason nurse said that this would mean his line could not easily be resited and would indicate a clear need for an isolated bowel transplant (if the liver is OK). I had the chance to quiz the registrar a bit while he was going thorugh consent for the procedures tomorrow and he explained that the veins are abnormal and would probably indicate either the portal hypertension that would mean his liver needs transplanting (along side his bowel) or that his main vein, that both sides of his neck feed into, is blocked, indicating the need for a small bowel transplant. We still could be told that he can still manage on TPN for a few years and a transplant can be put on hold for a while, although the frequency of his line infections also comes into this. All will be revealed in the next few days.

Our programme is full of scary looking meetings with surgeons and transplant co-ordinators. We are also meeting the doctor who is researching the syndrome our geneticist thinks William may have. I am really looking forward to meeting her as she may be able to throw more light on his conditionn and give us some more info. It would be fantastic to come away with a name to call it (there is no test so it can't be a true diagnosis).

William had an abdominal ultrasound today and I had an information session where we went through William's blood test results and talked about organ donation facts and figures. Apparently, there is a potential pool of approx 600-700 donors a year. Of these, 200-300 do not donate because the family say no or, more usually, because the family were never asked. There is the potential of 1500 organ donors a year. If most of these became donors, there would be no need for schemes such as the 'opt out' scheme. There is a current target to have a donor co-ordinator in every hospital with an intensive care unit to try and maximise donors. Of the 6-700 donors, only about 25 are children aged between 0-18. William could receive a bowel (and liver) from a child up to abour 40kg. They can cut the organs down to fit and, in desperation, we could go up and even receive from an adult. However, it is best for him to have a child up to 40kg. His blood group is o. 5o% of the population are an o but o's can only receive from o's. This means, there are probably about 5 donors a year that he could recieve an organ from. That is five situations in which we would have to hope that the organs were good enough and that information was given in an appropriate way and the family consented. Of course, we also would have to hope that there was no-one else who the organs could be suitable more sick than William and that William was well enough to receive (i.e. not sick with a line infection). There is more info on all this at the UK transplant website.