Up and Running

William has finally finished his antibiotics and we are slowly getting on top of his fluid balance. He had a bit of a dip in his blood count yesterday so had a transfusion of red cells. He is lovely and pink now and, as you can see, full of energy. We are hoping to get his fluids and electrolytes stabilised and home at the beginning of next week. We are keeping everything crossed that he doesn't get any more infections in the mean time.

Goodbye to a very special friend I hoped I would meet some day

This picture is the gorgeous 'Toria' with her beautiful son, Edward. I have taken it from her blog If you read the comments on my blog you will see some of the lovely words of encouragement and support she posted there. I never met Toria but hoped I would eventually. Now, I never will. Last night, Toria lost her fight with cystic fibrosis. She was 23 years old. I am so sad and am typing in tears. I only knew her for a short while and only through blogs but I will miss her so much. My love and prayers go out to Edward and her husband, Luke.

Breathe easy Toria xxxxxxx

Robyn's Rainbow

William had his new line in yesterday. It was a really traumatic time for him as he is now terrified of 'special sleep'. He then slept most of the day but woke to a lovely surprise - a fantastic Thomas balloon from Robyn's Rainbow, run by Live Life Then Give Life (LLTGL). He was SO happy. It really put a big grin on a very sad and fed up face. Thank-you to all at LLTGL and to all Robyn's family and friends and everyone who has donated. I hope the smiles in these pictures show you how much it is appreciated. Please read on to find out more about Robyn's Rainbow and how you can help send rainbows of hope to people like William who are waiting for transplants, or having a tough time after receiving one. I have taken this from the justgiving page so you could just go there and read it for yourself.

What is Robyn's Rainbows?

Robyn’s Rainbows™ is a charitable initiative run by Live Life Then Give Life to offer support to very sick or struggling members of the transplant community.
Following nominations from the public, Live Life Then Give Life sends struggling members of the transplant community a small beacon of hope in the form of a balloon, to let them know they are being thought of. The aim is to create a rainbow on the darkest days for those in need; to remind them that they are not alone and that sunshine might be just about to break through...even just to bring a smile to their face.

Who was Robyn Tainty?

Robyn was a bright vivacious young woman who happened to be born with the genetic lung disease, Cystic Fibrosis. Despite a lifetime of poor health and intensive treatment, Robyn never let her illness get in the way of living her life; moving in with her boyfriend, studying for a Masters degree and adding joy and laughter to all those around her.
In 2005 Robyn was told her lung damage was so severe that a double lung transplant was her only hope of survival. Robyn remained optimistic, fought hard to raise awareness, and had plenty of hopes and dreams for her future after a transplant. After more than 2 years waiting and hoping, Robyn lost her battle for life in September 2007, aged just 24.

Why is it called Robyn's Rainbows?

During her last few months Robyn spent a lot of time in hospital, during which Live Life Then Give Life sent her a balloon to make her smile. One of her best friends Matt commented later:
“I don't know if Robyn ever told you, but she loved the balloon that you guys sent! It was sitting very proudly next to her bed, from the day she got it, right till the end.”

How can I help?
It's simple. By raising money and raising awareness! Just £12 will allow us send a Robyn's Rainbow to someone in need . We want to be able to support as many people as possible and to keep them smiling whilst they fight and hope, waiting for the call that if it comes, will change their life.

Robyn’s Rainbows is dedicated to Robyn and the rainbows she brought into other people’s lives...just by being there.

http://www.justgiving.com/robynsrainbows

Time for a cuddle

William has had a horrible weekend with peripheral cannulas (small plastic tubes) supplying his fluid whilst his Hickman Line is out. The amount of potassium and the antibiotics he needs are very tough on the veins and it has been very painful for him. His new line should be in tomorrow morning.

The main reason for this blog was to share these lovely pictures.






You never know what you will see out of your window. These guys cheered us up this morning!

!

Line Out

William had his line out today. It was a tricky procedure as it didn't come easily. The surgeons were none too keen to take it out as IV access is becoming a problem for Wills. Once again, I was reminded how badly he needs his transplant. There is another little girl in here at the moment who is waiting for a liver and bowel transplant. Her parents have been told that she needs it urgently as well. Both children need it right now really, as I expect to most of the children on the liver and/or bowel list, given that it is a last resort option with bowel transplants still relatively new and complicated. It is a worrying and stressful time for us all. I think things will feel a lot better once we get home. It is a vacuum in hospitals and things feel a lot more intense.



I have put some more images up on the arty-farty blog

Living in A Box - the photos

Here is William making his box home and a couple of other shots of him being entertained in his room. We are getting into a routine with the isolation now with school coming in twice a day and our wonderful Sue coming in from home a couple of times a week. William was due to have his line out today but it was postponed to tomorrow because the emergency theatre slot ran out. His new line will go in on Tuesday and he will begin the antibiotic line locks in the hope it will last more than a few weeks this time. He is still on 24 hour TPN and extra fluids so we will wait and see if things settle when the line is out, otherwise he will need his home TPN re-formulating and will end up staying in hospital a little longer. We can't wait to get home and see Hope and Ellie.

Living In A Box

To me, William seems to be doing well and getting better from his line infections. However, his platelets dropped over the weekend and his liver function tests are poor for him. All in all, his blood tests suggest he has been a bit more 'septic' i.e. the infection had more hold on him than we thought as he fights and copes so well and looks well for the numbers showing in his blood. He has to remain in isolation for the time being so we get our own cubicle but there is no school or playroom. The good news is that it could well be the sepsis that is causing him to need more fluid as it has an impact on his kidneys. The bad news is that we look set to loose his line. We are going to try these line locks, an antibiotic, antifungal and antiviral agent that will be locked in his line when he is not on TPN to kill anything that wants to set up residence there. The team think it would be better to do start fresh with a new line. So, we will soon be doing the usual, almost monthly these days, routine of the line coming out and a femural line in his groin put in for a few days before a new one is put in. This time, the team want him to go to Birmingham for his new line as there are experts there in getting lines in children like William with limited central line access. Our team also want to update the transplant team as they are not happy with the way things have been and want advice on managing William in the medium term and hope his transplant will not be too far away. I must stress as the girls read this that Wills is OK but that he is on the maximum of everything and there it not much we can do when he is unwell. His bugs are getting resistant to the antibiotics and his liver is struggling with the constant infections with numbers creaping up suggesting his liver will eventually start to fail if these infections were to continue for a lot longer. This is a key reason why we were referred for transplant and it was very much the right thing to do to choose this option. He needs his call as soon as possible. It still upsets me to think like this because of what I am wishing for someone else but he does need it. I almost play games with myself. For example, a wonderful Mum on the ward who lives nearby saw me handwashing our clothes (the washing machine here is broken) and offered before insisting she takes it home with her to wash. She took some today, including my favourite jeans. Now I am wondering if I we will get called, leaving it behind. Does being somehow not ready make it more likely to happen? It would be a very small price to pay.

I am off for my journalism course tomorrow. The writing is keeping me sane at the moment. We had a task to write a column this week. I would love a column in a family or health mag or newspaper page. I have a book on parenting a chronically sick child called 'Extreme Parenting'. This is what I would call my column and it would combine our story with our experiences of 'extreme parenting' such as giving up a good job with a big wage and living on a low income (topical at the present time), entertaining a small child on a drip 20 hours a day, coping with separation from Hope and Ellie, enjoying days out with a buggy or electric wheelchair and no car.... It would be humourous, as we have to find the funny side and would cliff hanger ending each week - will we, won't we get the call and then how is he doing each week. It would also raise awareness of transplants and organ donation. We are supposed to be having a session on how to get a column tomorrow so I hope I can work out some ideas on how to pitch it afterwards. I would read it! Here is the sample of how it could look that I am going to take in tomorrow (I bought a printer to use in hospital today. I just can't get on with the amount of time we spend here without one!). If anyone has any mag or paper that springs to mind where it would fit the style then please do let me know.

‘Extreme Parenting’ (series title)

Am I living in a box?

This week has been another week spent in our ‘Chelsea Pad’, the affectionate term we have adopted for Chelsea and Westminster Hospital. We have been coming in and out of here for three years now, unfortunately, of late, more in than out. We are usually on the same ward every time, almost always in one of two beds. It doesn’t take more than a couple of days to feel stuck in the rut that you had managed to escape from for a couple of weeks. There is a daily script that everyone sticks to, often quite literally. Wonderful people whose sole aim is to help will come in at exactly the same time every morning and utter the exact same words, every single day. Over the years this has gradually become more and more dispiriting. On Wednesday I woke up and prayed to be set free from the ‘Groundhog Day’ loop. What do they say about think hard about what you wish for? A few hours later my prayers were answered. William has a particularly nasty and potentially infectious little bug and we were swiftly trundled onto the ward next door and into a cubicle. The loop was broken but with it came a price. I am now in a box, with no outside windows, with a lively but poorly and fractious four year old tied by his drip to a pole twenty four hours a day.

I have had to draw all my resources to keep William entertained without resorting to spending copious amounts of money in the nearby Chelsea shops. One good thing our confinement is that I am unable to escape with him to the Kings Road where I would be forced by very strong persuasion and guilt to buy him a daily supply of Thomas the Tank Engine books and new engines. There is a newsagent adjacent to the hospital and I have succumbed to a few magazines in my moments of creative weakness. In my defence, these have been milked of every available second of entertainment. Once the stories have been read, colouring and activities done the pictures are cut into jigsaw puzzles, sorting games, memory games and for sticking collages.
I have to keep up my own work whilst in hospital as we may not have a home to return to, especially in the current climate of mortgage defaults and house repossessions. I have my laptop and mobile internet which doubles up in the day time as a DVD player and an endless supply of children’s TV tie in websites. I realised today that I really can’t manage another week without a printer so purchased the cheapest and smallest I could find within a thirty minute return trip while William was having a school lesson in his cubicle. We can now print the activities and templates from the websites and already have a plea in the parent’s room for discarded boxes and juice bottles so we can make a ‘Mr Maker pasta robot’. As I was setting up the printer, William investigated the box it came in and ended up climbing in. A whole hour passed while we decorated it before William sat in it his new ‘house’ to watch another DVD. Making a house is one of his ways of expressing his very strong desire to go home from hospital. Meanwhile, he is taking this ‘living in a box’ to a new extreme.

Stuck

We didn't go home yesterday. William's blood numbers are not too great. There are suggestive that he is not yet fully over his infection or may be brewing another, in fact he has spiked a bit of a temperature today and is now on another antibiotic just in case...we will know if he has a new bug tomorrow. He is also dehydrated and is back on 24 hour TPN with an extra 500 mls fluid - making over 4 litres a day! It looks like he will have to stay on at least 22 hours TPN from now on. Ideally, he needs 24 but the liver needs a break from processing it. Even going up to 22 will threaten the liver more than a shorter period on TPN. Hopefully, this will not be for too long and we will get that call. For now, Wills still has a bit of a battle ahead to get over this infection completely and get control of his fluid and electrylyte balance before we can go home.


I miss Hope and Ellie so much. So much goes on in their lives without me and we all miss out on sharing our lives. William is unwell more and more of the time and it is taking us longer and longer to get him well again each time. This is all getting so much harder to deal with but we all just need to keep strong and hang on in there. We will get that call one day. Our precious donor will not just be giving life back to William life. In so many ways they will be giving life back Hope, Ellie and I as well.

I have put some more images up on the exploration blog. I think they do a good job in reflecting how I am feeling right now.

Stories shared

My writing career is really taking off and I can not call myself a published freelance feature writer (while naturally working on a novel). I am also working on some poems to go with the images I am taking to capture our transplant journey. I was back at City Lit for my journalism course this morning and came back to find my creative photography course had arrived. It is all coming together very well indeed and I am very excited. I was really pleased to read comments on my blog from Holly saying that she also felt inspired by the 'Transplant' installation and also by my arty-farty blog to photograph her own kidney transplant, set to take place next week. It is great to think my 'work' has inspired someone, especially as I am really a beginner in this kind of photography. It just goes to show that anyone with a bit of imagination or a mad idea can be an 'artist' and have an impact on others (Paul!!! ;-) ) I can't wait to see what Holly comes up with, especially as she is already a freelance photographer. It is great that so much can now be shared over the internet, linking people who share experiences.

I am writing some pitches about organ donation among children and young people ready to send to a handful of publications tomorrow (they are drafted but I have succumbed to the horrible cold going around this place and my brain has turned to cardboard, in need ot honey, lemon and sleep before I press the send button on anything). As I am writing about transplants and organ donation, I have set up some google alerts. I was very sad to open my inbox this morning to find this story from The Birminham Mail about a little boy called Ubaid Ali died at the beginning of September while waiting for a liver and small bowel transplant. Ubaid was just 15 months old, the same age as William was when he went onto TPN. Ubaid's time on the list ran out just as we were joining it. He died on a ward just down the corridoor from the ward we stayed in during our transplant assessment. My love and prayers go out to his family tonight.

Wills is doing well. He has some fluid and electrolyte balance issues but is clinically well and over his infection so we are hoping to go home on Friday and tweak the TPN at home.

What caused this look of horror?

Of all the painful and distressing medical interventions William has to go through, what do you think was the thing that caused him to look so dismayed and run down the corridoor in an attempt to escape? A bath!!!!

It's a small miracle I'm blogging today at all...

I left William (or Wilz as he has decided to be called from now on. Wth the help of a set of magnetic letters he decided that looked pretty good!) for five minutes to pop to the loo. We then went out for a look round the bookshop. I came back, frazzled after the biggest of toddler paddies at leaving the shop before Wilz had had the chance to be read the WHOLE series of Thomas books. What was waiting us in the sink? My portable modem directly under the incessantly dripping tap! William had been 'washing it'!!! After being more than just a little cross, I pulled out the sim card and left it to dry. Later in the evening William had a set of IVs. The nurse put the tray on top of the sim card and when I went to get it to test out the modem...it had gone! What was the odds of finding it at the bottom of the clinical waste? I hadn't realised how cut off I would have felt without my internet, even for just a day or two whilst I waited for a new modem and/or card.

William and I have been a bit fragile with each other this afternoon. We have spent five days technically in a box with William attached to a pole twenty four hours a day. Wills tends to lash out when he is fed up as he can't run away. We had to have big words about punching and saying 'go away, I don't like you'. He went to sleep this evening contemplating what would happen if I did go before a little voice squeaked "Please don't go Mummy" This was followed by very long cuddles. He is one tired and fed up little boy. Thankfully, we were told today he is no longer in isolation and the pair of us were like a stretched elastic band that was just let off! We are still in our cubicle as there are no double bay beds to put us and Wills can't go out on the main bays. So, for now, best of both worlds for us. We have our own space but he can go to school. Even better news is that we should be home at the end of this week or beginning of next - as long as William stays well and maintains fluid balance on his normal TPN regime. Fingers crossed!!!

Thanks for all the comments on Saturday's blog. Social interaction in this kind of environment is a fascinating subject and one I will revisit.

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!