Sunday, August 31, 2008

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.

Thursday, August 28, 2008

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).

Wednesday, August 27, 2008

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.

Sunday, August 24, 2008

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!

Thursday, August 21, 2008

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.

Sunday, August 17, 2008

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!

Friday, August 15, 2008

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.

Thursday, August 14, 2008

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...

Wednesday, August 13, 2008

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.

Tuesday, August 12, 2008

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.

Monday, August 11, 2008

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.

Sunday, August 10, 2008

Weekend Break

We had a break from tests and meetings over the weekend. It was a very welcome interlude from the intensity of transplant assessment but I met it with a mixed response as I would have liked to get on with things. William enjoyed his break. We went to the Sealife Centre yesterday and then onto the art gallery. It was very busy in the Sealife Centre, due to the typical British summer weather. I think Wills was actually a bit overwhelmed and was much more relaxed in the quieter art gallery. It is lovely there, free and very interactive. I think I will spend a lot of time there if we are here for transplant. William will be isolated for 6 months to a year post transplant so we need to get in as much as possible now. You need to take double doses of anti-rejection drugs following a bowel transplant so infection risk is much greater. That is the bit I am least looking forward to if we are listed following this assessment. William will have to remain at home for this initial period - no shops, church, school, outings apart from a park if it is very quiet. Thank goodness for internet shopping!

Today, Paul came up for the day. We wondered around the shops and played for a while in the sand at the Bullring Beach. William chose a cooking book from the book shop. Perhaps we will be able to talk about eating the food as well as making it after we have got through this coming week. After a brief pop back to the hospital for his IV antibiotics, we all went back to my hotel room and enjoyed hanging out together there. We are all now bracing ourselves for this week. Lots was postponed last week and we now have 5 information sessions with the liason nurse, meetings with the dietician, gastroeneterologist, transplant co-ordinator, anaethnetist (I can never spell that word!), surgeon, stoma nurse.... , numerous tests including biopsies, endoscopy, vein CT scan, kidney function test, ultrasounds... and then, the final meeting to receive the recommendation (or news that further tests are needed and we have to come back again!) It is going to be quite a week! It is dawning on me now how big this is. You get so used to the idea of a transplant when it has been forecasted for over 2 years. You think about it, talk about it and meet lots of people who have been through it and it all becomes a lot more normalised and seems like just another operation or treatment option. It isn't though. It is a pretty big thing really. The information sessions this week will tell us just how big that is. At the end of the week, if we are not asked to return for further tests or wait for outstanding results, we will be told either William is not yet at the stage where a transplant is immediately essential or that they recommend a small bowel transplant or a liver and small bowel transplant. I wish I could fastforward to Friday now.

Friday, August 08, 2008

Day 5 - Feeling much better about things

I feel SO much better today. We had a fab nurse last night, just what I needed when I got back to the ward feeling ready to bundle William up and go home. Our nurse today gave me loads of time and talked things through. There have been some big issues among the liason team and this week, especially today, has been impacted by some very difficult circumstances. We just had communication break down yesterday and it coincided with me feeling at my most knackered and home sick.

We met with Dr Gupte today, the consultant in charge of Willaim here. Our nurse listened in as there was no liason nurse available. We still have to be really sure William's underlining neuro genetic condition is not degenerative but no one really thinks so. It may mean that we don't get a definate answer at the end of next week but Dr Gupte hopes to be able to give us a clear recommendation. We are lucky as he was meant to be away next week but is no longer going to be. He explained the issues. William's veins are all blocked on the right and patent on the left. He has clots and they have to make sure they are not travelling, hence the CT scan. This is to make sure he is safe for transplant. Dr Gupte acknowledged his frequency of line infections and said that is the main reason why we are here. He said, so far, they have not found any reason not to transplant William but the neuro and venous issues still demand further tests and discussions. The other main issue concerns what William actually needs. He was referred for isolated bowel but they have witnessed the blood he gets in his stoma and the many pronounced veins and collaterals on his tummy. He may also have a bit of fluid in his abdomen. Due to all this, they are querying portal hypertension (although some things don't indicate this) and are now planning a much more detailed liver work up next week. His endoscope and biopsies will be critical and are scheduled for Monday or Wednesday - I hope Monday. The nurse interpreted his message as saying William needs a bowel but there are a couple of potential contra indications to rule out, or at least treat prior to listing, and there is a chance he needs a liver and bowel. I feel much better for knowing where we are at and why the neck ultrasound was insufficient as they only got the neck and they have to make sure his veins are not clotted further down, especially given the collaterals on his tummy. The nurse explained that these are not normal and either due to rubbish venous flow through his body - something that could cause a problem for transplant, or portal hypertension - meaning he would need a liver. We have also been warned that, if his liver tests are inconclusive, we will have to return for a special test for portal hypertension.

Today, our session with the dietician was cancelled again because of the things going on within the team. William finished his cognitive assessment with the psychologist. This took two sessions instead of the normal one because William kept on chatting through all the tests and turning them into stories. He also had his EEG, as did Thomas. I have some pictures but keep forgetting to bring the camera cable over the the hotel. I will post them tomorrow!

Bad news for us today was that William's line is still culturing positive for the same enterococcus bug as it has had for over 2 weeks now We are doubling antibiotic doses and hoping for the best as Dr Gupte doesn't want to pull the line. I guess it is good they can see for themselves the trouble we are having getting and keeping lines clear from bugs translocated from the gut. This also means we will probably have to go back to Chelsea and Westminster from here, rather than home.

Very good news today was that the little baby who had the transplant on when we arrived here on Sunday.

The weekend is free time (apart from IV antibiotics). I am looking forward to the break but it is a shame we 2 empty days with no more movement towards the outcome of the assessment. Tomorrow, we plan to go to the Sealife Centre and Paul will be with us for the day on Sunday.

Thursday, August 07, 2008

Day 4 - Wishing we were back in our Chelsea Pad

William had a barium test today. The solution should have taken several hours to leave his stomach and travel through his small intestine. It began OK and looked normal....until he suddenly dumped the whole lot out in a gaseous explosion, just as we were told to go and come back in 40 mins unless the barium appeared. We had literally only just left the department and were about to go into the lift up to the ward. We went back to find he had dumped almost the whole lot and there was none left to coat the intestines for the final picture. It took him just over an hour. No wonder he has chronically high stoma losses!

I am struggling to settle here at the moment and really missing our own team and our own hospital. It is like moving schools in the middle of the year when everyone knows each other and you are the new kid on the block, not knowing who anyone is or how anything works.

Wednesday, August 06, 2008

Day 3 - Back on Ward 8

We are all back on ward 8 - the liver ward, following the deep clean. We are on a bay with 3 babies who don't sleep through the night. The nurses seem to like to talk in daytime loud voices too!! Poor William couldn't get to sleep as the main lights were still on at 8.30. He does need his routine. I like the ward at our Chelsea Pad as, even on the twin bays, there are seperate lights for each bed space. I think I am going to opt to sleep at the hotel and get up early, before William wakes.

William got to work learning about his assessment for a new tummy and Thomas' assessment for a new engine today. He went down to see the CT scanner as he will need a CT scan of his neck veins later in the week and they want to avoid doing it under anaesthetic. I met with the transplant nurse specialist today who explained that this is the crunch test for William. If it confirms his veinous access is very limited, he will be listed for transplant. If there are a few places to put lines they will think about whether or not he should be listed with all the line infections he has been getting or if we should stay as we are for a while. She also explained that he will be having an endoscopy to see if he has any varicous veins inside that may indicate liver damage. If he has them, he will need to be listed for a liver as well. If not, he will have a liver biopsy to see what stage his TPN related liver disease is at. If it is stage 1 or 2 he will need only a bowel (if anything) and if it is stage 3 or 4 he will need both liver and bowel. So, he could end up not being recommended for any transplant at all, he could end up being recommended for small bowel or could end up having a liver and bowel. The encouraging news is that she gave an approx 70% chance survival at 2 years for his age and size in either case. If you have survived 2 years you have an excellent prognosis for the future.

William had an ECG and heart echo today to check he is fit for transplant there. He also had a cognitive assessment with the psychologist. She has requested to see him again on Friday as they didn't finish the test - no doubt because William took her off topic several times. His sense of humour is becoming well known here already. He announced to the play specialist, Kerry-Anne that he was going to call her 'Kareoke'. He couldn't answer when she asked him if he knew what that meant but said he was going to call her that anyway.

Tuesday, August 05, 2008

Settling in - transplant assessment day 2

I am writing this blog from a lovely room in The Thistle Hotel in Birmingham. The Children's Hospital has a contract here to provide parent rooms. It is certainly a lot cosier than hospital parent accomodation. At the moment, I plan to spend the evenings here and sleep on the ward with William. He begged me not to 'leave me all on my own'. However, we visited my room together before he went to bed and he found the biscuits. I am allowed to come here in the evenings if I sleep with William afterwards and bring him a biscuit back to smell in the morning. I reckon I could get away with it if I got up at 6 and got back before he wakes. It would be sods law that would be the one day he woke in the night though!

We are settling in and William is charming everyone. We had a few sessions postponed today, so tomorrow is going to be crazy! We did have a chat about practical issues with the social worker. She felt that William's quality of life and life in general for us all will be a lot better post transplant than it is now. William had a preliminary 'get to know you' session with the play specialists before getting to work on preparation for potential transplant tomorrow. They are making him a special book all about Thomas breaking down and needing a new engine. Tests today were a chest x-ray, wrist x-ray for bone age and ultra sound of his neck veins. This confirmed what we already know. The radiologist was being careful not to say that she was struggling to find veins but I put her out of her misery and told her we already know and that is a key reason why we are here for transplant assessment. He has one good vein on the left and that is it. We have been warned that we may have to come up here for future lines if he is listed. They will do an MRI scan to establishe where they can put lines for a transplant and will write a plan. They will want to take over responsibility of his veins to prevent another surgeon placing one and destroying a vein they have chosen for his transplant access. We also had a neurological review. William was tired and fed up then so not on his best form but the neurologist could see that he is bright. He has clear physically disabilities and she agreed that he has the look of a genetic syndrome. She is going to talk to colleagues but doesn't feel that it is degenerative. She thinks it is either mild cerebral palsy associated with his prematurity or a 'neuro-genetic' condition. This should be enough to satisfy that his neurology should not prevent him from having a transplant and she did say she felt his physical limitations would improve post transplant. We discussed his current possible diagnosis of tricho-hepato-enteric syndrome (THE). Most children have not survived long with this and, with the improvements in home TPN etc, William is doing better. If he has it, it is severe in his gut but mild in his liver. A syndrome is a collection of symptoms and not all children with the same condition are the same. It could be that there is a motor component of the syndrome that previous children have not exibited because they did not survive infancy or because that component was not so pronounced for them. The neurologist felt, as do most doctors, that William does have some kind of very rare syndrome, possibly THE. For the transplant, a definative diagnosis doesn't really matter as his new bowel won't have the genetic condtion - just like new lungs in CF.

It has been lovely to see people from the 'transplant kids' forum. James and his family are lovely (who I referred to a few weeks ago when introducing his fantastic story). They were in for stoma reversal and went home today. I will miss them. I am now getting to know another family from the site who are having a more bumpy post transplant ride. The Mum (whose name I don't actually know so will ask tomorrow) gave me a pile of vests their son had outgrown. I only packed 3 for William to sleep in as we have a washing machine at Chelsea and Westminster. There is one token operated machine for the whole hospital here and all William's are damp and yellow from leaky nights. Tomorrow evening, the hotel room will become a laundry.

Monday, August 04, 2008

Life in the washing machine - William's transplant assessment day 1

William had a great birthday. I never got around to blogging about it but the pictures tell the story of a little boy who woke up determined to have a great day and made sure he enjoyed every second of it. The pictures are all on facebook and here are a few of my favourites. It was a good day but we did miss Hope and Ellie.

Yesterday, we arrived at Birmingham Children's Hospital for our long awaited small bowel transplant assessment. There were major stresses and worries along the way as William had a line infection at the start of the week and we were unsure if he would still be able to come for his assessment. We had an agonising wait for news that he could still come as he was clinically well enough after the first couple of days of antibiotics. However, on Friday we were told that there was no transport available to take us there. An ambulance was arranged for us on Saturday - from the same place as was tried previously to be told there was no crew! All seemed to have finally fallen into place until Sunday morning, just as we were waking up to go. William's TPN pump decided to chose that night to break and fail to charge. We had no battery to get up to Birmingham. With the ambulance crew waiting and me tearing my hair out packing the last bits and pieces, Paul put our back up pump onto a taxi on his way to work and we all prayed there would be enough charge on it to get us there. Luckily there was and we are here at last!
Emily talked about the experience of waiting for a transplant on her blog a week or so ago ( She gave the example of a woman waiting with her father for his heart transplant and how she thought it more of an emotional washing machine than an emotional rollercoaster with all the varying emotions coming at you at the same time rather than ups and downs. It certainly feels like that for us right now.
They are deep cleaning the ward we should be on right now so everyone is on another ward, which has been closed specially so 'ward 8' has taken over 'ward 2'. We will be here until Wednesday when we will all make our way back to ward 8. We are in a 4 bed bay all by ourselves. When we arrived yesterday afternoon we were opposite another family. They had flown from Belfast at 4.30 am following their call for a new stomach, small bowel, liver and colon for their little girl. Of course, we got talking to them throughout the day and shared in their excitement and anxiety - they were well and truely in the middle of the washing machine cycle that we were just stepping into the edge of. It was strange seeing it all happening in front of us. The family leaving to take their child to theatre, the anxious waits for news, updates from the transplant coordinator, relief that the operation was over and things had gone to plan... It has made this whole experiencee of assessment seem so much more real. It is also less scary in a way as I have seen a little girl go off to theatre, heard from her parents of all she has gone through and know that she is now in intensive care doing well. There is another family here who have been in to have their son's stoma reversed as he is doing so well 3 years post transplant. I got to know the Mum though the transplant kids forum and it was so lovely to have someone to look out for and say hello up here. Paul was here yesterday and today but can't be here now until next Wednesday and then only for the day. I did feel very lonely and daunted when he left.
On arrival yesterday, we were given a schedule for all our sessions and tests this week. Today, we started the day with a dental check for William. This is to make sure there is no infection in his mouth that could cause problems while on anti-rejection drugs. All was well there but we need to be seen here every few months if William is listed- all the way to Birmingham to see the dentist! Next, William had a developmental assessment, the Bayley's assessment, with the physiotherapist. He passed the cognitive section with flying colours but dis not do so well physically. This was just what we would expect and she was happy that he is fine for transplant from her perspective. We had time to grab a very quick sandwich and change William's stoma bag before Paul and I left him having his IV antibiotics and went for a pre-transplant assessment with the clinical psychologist. This was to see how we are coping and how all the family are coping and will cope with a transplant. We have had so much time in hospital lately that we have worked through most of the practical issues and I think we impressed the psychologist with how many contingency plans we already have in place. Life has been very unpredictable for a long time with a constant possibility that William will be rushed to hospital at any time and stay there for several months. A transplant won't bring anything new in this respect. We returned to the ward and met the play specialist who explained what she will be doing with William this week and with the girls in the future. We then escaped to look round the shops. Apparently, we were called for a chest and wrist x-ray as soon as we left the ward and the neuro team came to see him when we were out. They are coming back tomorrow, one of our 5 scheduled sessions of the day! I was told this process was intensive!
As ever, William is taking it in his stride. He woke this morning and told us straight away that the little girl had her new tummy and now we are going to see if he can have one so he can have a picnic. Later on, while on his way for a bath, he spoke to the boy in for his stoma closure. He had just two questions to ask
"Have you got a new tummy"
"And do you eat"
"Yes (his Mum adds he is eating pizza)
"Uh" (William grunts with satisfaction, a big smile on his face as he toddles off for his bath, apparently with all the information he needs)