William Eats Thomas!

William has not yet been given the green light to start eating but got tempted by a rice paper 'Thomas' from a fairy cake kit we were using to make Thomas biscuits for the nurses. I love rice paper and ate 'Henry' and his nurse saw no reason why William couldn't have a taste of an engine. Afterall. a tiny bit of rice paper won't even make it to the stomach. As you can see from the picture, he didn't hesitate in the slightest. He was really pleased with himself but wasn't too keen on the stickiness in his mouth and ended up having a few sips of water. He hasn't quite learned how to suck on a straw and actually get some water. He has a lot to learn. William hit a ladder at last today and is now on half feed and half TPN. At this rate, he should be off TPN by Wednesday and should get his first real tastes in the next few days. Strawberry yogurt and Advent calendar chocolate are the tastes William is looking forward to sampling first.

I am travelling back to London tomorrow to host Brompton Fountain drinks reception. I will be back late so don't worry if there is no blog. I will update on Tuesday. I was worried I would have to turn up trying to look poised and professional in my jeans and converse boots. William saved the day by wanting me to pop out for sweets, icing sugar and biscuits so his 'bakery' could be open. I managed to extend my agreed time of leave half an hour to grab a dress and some shoes - good old M and S! I think it is important to present myself well tomorrow. Naturally, life has been somewhat chaotic over the last year. The future is looking good and 2009 should be a lot calmer. Tomorrow will represent the start of my future regarding work. After tomorrow, I am taking leave over Christmas to relax, come to terms with everything and catch up with myself. I will then be ready to start afresh with work, my writing, theology course and photography (I have taken loads of pics Holly, I just need to sort them all) and the other things that have been juggled around living in hospitals for the last year. Thank-you so much to those who have supported The Brompton Fountain and pledged support from next year. You have all given me such a boost when the juggling has been tough.

Three Wishes in a Silver Bag

Things are really beginning to settle down for William now. I say that with caution as I know only too well now that things can change but we are all much happier with his progress at the moment. William is now up to 10mls per hour of feed and will be going to 15 in a couple of hours time and then a 5 ml increase every 12 hours. We are just about inching our way past that nemesis snake and all is looking good. The main problem for Wills at the moment is one we have known of old - fluid balance! Although nothing like the huge volumes his old bowel was losing, he still has high stoma losses and we will need to get to the stage where this can be replaced with boiled water via his gastrostomy before we can go home. Along side fluid balance comes electrolyte balance and William is still needing an infusion of this and that to correct electolyte deficiencies. We all hope that we are past the stage where he was unwell and unstable but we are likely to enter a frustrating stage now where we get everything working properly and balanced to reach the level of stability needed to be home. This can take a while so patience and that idea of taking things as they come will be important over the coming weeks. Strangely, and typically William, his bowel is nocturnal. Typically, the bowel slows over night but William's stoma pours more over night than during the day, despite the fact that he is currently on 24 hour feed and TPN!

Now things are more stable and I no longer have to worry what the next hour will bring (at the moment, I have to keep reminding myself of that!) I am able to reflect more on our experiences over the last weeks. One thing that has been a tremendous source of comfort and support to both William, Hope, Ellie and I, is the amazing generosity, kindness and care that 'strangers' have shown to us. I use inverted commas for strangers as I hope many of these people will soon be people I would class as a friend. William continues to get a real boost from his post, a lot of which comes through the fantastic Postpals This is an amazing charity led by fantastic people who really do make such a difference to children like William. Thanks to everyone who has written and sent him, Hope and Ellie parcels. I will update our Postpals page with more detailed and individual thanks but I will say thanks to Becky for the lovely pillow case you made him. He is really chuffed with it.

Today, I was just popping to the kitchen to get a top up of William's feed and bumped into someone at the door who obviously knew me. It was 'Aunty P' as she posts on the comments page. Aunty P is a trustee of the charity The Donor Family Network and someone I have got to know through my blog and the general transplant community that exists on the internet through the various blogs and forums. William is a bit on the shy side at the moment but Aunty P, you were a huge hit! He told me after you had gone that you were really funny and hoped he will see you again soon. Aunty P is also my Christmas Fairy! She mailed me some time ago offering to grant me one Chrismas wish to help me have a good Christmas in hospital. I am sharing this story on here because it worked out so well that I got three wishes in one and because it reflects the true meaning of Christmas. I would have wished for friends as it can be very lonely up here. I miss my home Church loads and would also wish to have that feeling of being part of a Church and being with Christian people to talk and share with. However, knowing that could well be rather tricky, I wished for some lovely wool to knit while I watch Christmas TV with the idea that it would feel rather cosy. Unbeknown to me, Aunty P leads a knitting group. She arrived today with all my wishes in a shiny silver bag. I had an extra present. A prayer shawl knitted by the group. This is a lovely item. It is a standard pattern, based on stitches in 3 to represent God the Father, Son and Holy Spirit. It is knitted with love and then prayed over and blessed before passing it on as a gift. The recipient can then feel it and snuggle in it to feel loved and prayed for. How lovely is that! In the bag was my wool and pattern to knit a beautiful soft, blue shawl for William. The bag also contained the Church newsletter and magazine and these came with an open invitation to come to events when I can, and the offer of a lift to get there and back. Along with this is the offer of people to come and visit me now Wills is getting better and things are more stable. So you see, my knitting project turned out to be something so wonderful and something I hope to take back to my own Church when I return home. I already have someone in mind to knit one for when I have finished William's. As well as this, my wishes of friendship and Christian community were also granted. I would already call Aunty P a friend.

These things are what Christmas is really about and something else that I will take away from this transplant experience that wil enrich the rest of my life and make me a better person.

Square by Square

"What do crocodiles eat?"

"Zebras?"

"Introducing 'Spencer' to the other engines"

"Reading the CBeebies listings - he has this pretty much memorised now!"

Another great day. I really think we have turned a corner now but have learned not to take anything for granted. William has been playing all day and even mobilising a bit around his room. He is feeling much better in himself now and is getting back to his normal self. He is now on 5ml per hour of feed, a special recipie used in the first few months after a small bowel transplant. So far, he is tolerating it well. He is still losing too much fluid from his stoma so increasing feed will be gradual and carefully monitored until this settles down. There are no plans, we just take each day as it comes. He will remain on full TPN for the time being until the feeds are established. I can't wait for the day we take down his last bag of TPN. Once I knew we would not be home for Christmas I began to dream of being off TPN by Christmas but I know it isn't helpful to set such goals. One of the areas in which I have grown as a person through all of this is in learning to just live for the moment and take things as they come, rather than storming along and planning what comes next all the time. I hope I will take a bit of that on into the rest of my life.

I met with the consultant who oversees all the small bowel transplant children today. This is something that will happen on a regular basis. Ward rounds tend to concentrate on the immediate issues of the day. The meeting is to share an overview of what is happening and enable questions. It was a really useful time for me to learn how William is doing, what his successes are, what concerns there are and the immediate plans to deal with them. The swelling William has experienced in his stoma is something the team have not seen before. We don't really know why it happens but the fantastic news is that all his biopsies have been normal with no rejection so that is not the cause. It is a lot more settled now and is working more consistently so I am happy. All in all, William has had his ups and downs but we are hoping now that he will progress steadily along. No more snakes and, perhaps, no ladders either - just square by square, nice and gently until he is stable enough to come home again.

Baby Steps Forward

Wills has had another good day. He has now started on 5mls per hour diorylyte. This is a tiny baby step forward but it is a step forward! We just wait and see if we can keep on going forward now and miss that snake that kept pulling us back to the start. Things are looking good so far. We gave his new bowel a good while to rest and recover from Friday's surgery and that was a good call. It seemed that the time was what it needed. We still have a way to go though so I am not going to think too far ahead.

He is still sruggling with acidosis and bicarb deficiency, dropping as low as -16 (some readers may understand that, I don't!) I do know that it should be 0 an - numbers are too acidic and + too alkaline so -16 is far less than ideal. We are not really sure why this keeps happening and just keep on correcting it with sodium bicarb infusions. The feeling is that he was just so depleted earlier on that the correction is not lasting. We will get there with this as well. A transplant is such a huge thing for a body to go through and William is really recovering very well. The team also still think he has some infection somewhere because of his liver enzymes. To me, they are not much different to before transplant. However, they did normalise for a while so, given that he had incessant infections prior to transplant and they are in similar ranges now, perhaps he does have a little bug somewhere. He is not symptomatic but his antibiotics have been changed in case.

William has scored a small triumph. He no longer has to have nystatin! He was so cross and upset about it that he held it in his mouth, refusing to swallow or open his mouth, even to talk, for a good hour at least each time. As he had it four times a day this was a bit crazy really. He now has a gel twice a day instead. He hates that too but will endure it with the threat of that or nystatin. He is certainly getting his personality back.

Paul has now gone home again. It has been nice to have the company. I feel morelonely and isolated up here than ever now he has gone. I will feel better after a good sleep. William was up at 5 this morning! I have a meeting with our main consultant and liason nurse tomorrow for a chat on how things are going and what he expects in terms of William's subsequent recovery. These meetings usually happen weekly but it has been too busy. I am not too bothered as the news would not have been as easy to hear until now. At least we should get something encouraging from our chat now. It is in these meetings that the 'H' word and plans towards it will be discussed, eventually! We have a way to go yet but as long as we keep taking these little steps in the right direction I will be happy.

A Great Day (At Last)!

Today has been the best day for Wills since his transplant! He has been up and playing all day. He made Christmas decorations this morning and played with his engines for the very first time. It has been lovely to see. There are still some concerns about how well the top of his bowel is working and so William is still not on any feed. He had a repeat x-ray and ultrasound today to compare it with yesterday and the lovely 'Prof' surgeon and surgical registrar came in this afternoon to tell us that the pictures are 'reassuring'. Hooray!! This is the first time in ages the doctors have come in with smiles to tell us thing are looking better (apart from after his two post transplant operations when they were initially pleased but then things didn't quite go as they thought it would). If things stay in this direction, we will start a tiny trickly of diorylite tomorrow. We really think William has turned the corner. You never know, we may have manouvered around our nemesis snake at last!

Paul and I also had a lovely day. Our wonderful nurses from CHASE Hospice Care for Children came today to look after William so we went off to enjoy the Christmas Markets again and do a bit of shopping. I had 'Currywurst mit brot' and Gluhwein for lunch which really brought back memories of the markets in Konstanz when I went there some years ago during my PhD years and early years as a lecturer. I had a research contact with a prof there and used to love to go when the Christmas markets where there. I am going to make as much use of the markets for lunch and tea as I can before they go on 23rd. They have been a really good morale boost for me. I love the atmosphere and the lights. The food is nostalgic and, of course, the warm spicey wine is very pleasant at this time of year. This has completely trumped my usual favourite Christmas treat drink of Gingerbread Latte at Starbucks. I haven't even been into one for weeks. Marks and Sparks do the best coffee round here.

Hour By Hour

10 am this morning

1 pm this afternoon

These pictures are a good illustration of what recovery from a transplant is all about. They say take it day by day but hour by hour can be a more useful plan.

This morning, William woke up asking for his advent calendar. His stoma had been working, if not overworking, all night and I was all set for a good day. By 10 am, William was in extreme pain, his gastrostomy was pouring out all his medicines plus a good hundred mls of bile and, of course, his stoma wasn't working. He was breathing very fast and bubbly and was in a real state. His nurse came in to do the 10.00 obs to find his oxygen saturations were worryingly low. The physio had come to do some work on his sitting and standing but ended up doing chest physio before leaving him on oxygen and very drowsy. This was all more than a tad worrying. The doctor came in to review him with news that his earlier blood test (gas) had shown him to be very acidodic again ('base -12' for the nurses and medical types I now know are reading this). This explained his breathing and drowsyness.

Sodium Bicarb infusions are magic. Look at how much better he was in the second picture when we were having a good old laugh at 'The Shiny Show'!

Needless to say, William is still pretty unstable and his bowel is working on and off. No feed was started today. The doctors do think he will get there eventually but just needs more time. He has been through a lot over these last three weeks and so has his new bowel. He was back in x-ray and his bowel is full of fluid. There are no obvious obstructions at the moment. It is all just a bit sluggish and needs to wake up and get going. The consultant left our room during the ward round saying 'We'll just have to see what tomorrow brings'. That is the best plan you can get in this post bowel transplant game of snakes and ladders. I am learning that it is even trickier than that. What is happening right now doesn't even necessarily reflect what will happen in an hour or two. I am so looking forward for things to stabilise. We will then, perhaps, be able to begin to move forward.

Grrrr That Snake Again!

We just can't get past him!!! Once again, William's stoma is swelling up (nothing like as much as before at the moment) and his bowel has stopped working. The feed has been stopped again and we have another anxious 24 hours to see which way things are going to go. It is such a worry because, until it gets going properly, no one can reassure us that William's bowel will definately get working, although there is no reason why it shouldn't. Things look good, the stoma is pink, the blood supply to and from the bowel is good so I am sure it will get going eventually.William had his transplant just two and a half weeks ago and, since then, his new bowel has been handled twice and bowels really don't like that. We have to keep on hoping and praying that it is going to work in its own time. I am not very good at waiting though. I want to know everything, what if this....?, what if that....? I want to know all the possible scenarios from the very best to the very worst and everything in between. The truth is, no one really knows any more than me. William is only the 59th child in the UK to receive a small bowel transplant and they have all been different. Each child throws up their own complications and no one knows why William's stoma, and probably thw bowel inside, keeps on swelling. It is so hard. You want the doctors and surgeons to have the answers but there really aren't any. We just have to watch and wait. Please keep your prayers and positive thoughts coming.

What is good is that William is getting better in himself and is enjoying his games and activities more and more each day. He made a video with the teacher today which I am hoping to put on here later. I tried this once before and it didn't work. I know some of my lovely blog followers have put videos on their blog. Could one of you please comment here on how it is done. Thank-you.

A Lovely Sunday

Painting a picture for Father Christmas (whilst watching Cbeebies)

'The Nystatin Look'

He certainly doesn't like it anymore and this is the look I get as he holds it in his mouth feeling very cross with me indeed! (Unfortunately for Wills he needs this four times a day for the foreseeable future and it has to be given into his mouth)

William has certainly turned a corner. He does still have a bit of a temperature but nothing too sinister seems to be developing. All in all, it has been a lovely Sunday. We woke late, had a lazy morning watching CBeebies and Thomas and reading and playing with a Thomas book that includes a wind up Thomas and tracks to go with each tale. I bought this the week of William's transplant and today is the first day he has felt like playing with it or anything really. Later, he painted a picture for Father Christmas - a rainbow to tell him that he wants a cuddly monkey, naturally!! A monkey was too tricky and William likes painting rainbows. I'm sure Father Christmas will understand. We had a giggle at Mr Tumble on Something Special - Wills was really laughing for the first time but it soon turned to a mix of laughter and tears as he realised where the saying 'only when I laugh' comes from. After lunch, we made paperchains before William became tired and wanted to spend the rest of the day listening to his favourite Thomas story CDs and resting with his night light on.

Today has been the first day I really feel he has turned a corner and is on the mend. He is getting his willful personality back - he certainly doesn't like his Nystatin anymore as you can see. He holds it in his mouth for ages, bringing back many childhood memories of doing the same thing with something that tastes nasty. When do we learn to knock it back quickly and get it over with?

My only concern was that his stoma only produced around 20 mls over night and 7 all day. I couldn't cope with his bowel still not working after two further operations. I watched it all day and even checked with his stethescope to reassure myself I could hear bowel sounds. At around seven in the evening, William announced that he wanted me to go away for 'just a little bit and come back' no doubt because I was insisting on giving him his Nystatin and cleaning his teeth. After a quick google showed my that the Christmas Markets are open until 9 each day, I decided to take him on and off I went, reassuring him I would be back in an hour. I spent a wonderful hour, forgetting about stomas and bowel sounds (and I really did), enjoying the best 'Gluhwein' I have had outside Germany (which is probably why I forgot about the stoma and bowel sounds, I will be back before the market ends!) and doing a bit of shopping. I got back within the hour to find William asleep and with a half full stoma bag!!! I certainly learned that it does me good to get out for a while and with the market just a 10 minute walk away I think I will be back for more of the hot good stuff.

I Promised Some Smiles...

William delivered them today. I asked him how he felt at one point today and he said 'comfortable'. Fantastic! He has been very sleepy all day, partly morphine and partly because he is finally more comfortable and has a lot of sleep and rest to catch up on. It has been a lovely calm day. We are still waiting for his stoma to start working properly and I will be relieved when it does. It is normal to take a few days for it to get going after surgery. He was also a bit sleepy because his temperature is rather high. This could well be due to the anaesthetic but infections are a big risk at this stage following transplant when the level of immunosupression is at its highest. Whatever it is, it isn't too bad as Wills is on pretty good form, all be it a bit puffy from anaesthetic and steroids.

Wills is now peacefully asleep and I am hoping he will stay that way until at least 6 am! I am about to get the bed out and settle down with a hot chocolate to write some thank-you letters for all the lovely things people have been sending to cheer William (and me) up. I will send my thanks here and now to those who have so generously sent a card or something without a contact for me to write my thanks to personally. William received his Thomas night light and torch yesterday, just as he was going down to theatre. Along with a teddy bear that Father Christmas gave him the day before, it was the only thing he was interested in yesterday evening. He couldn't wait for the lights to be switched off. It is on his bed with his 'friends' (cuddly toys) and he switches it on the minute the dusk falls. Thank-you all so much. All William's cards are on the wall in front of him. We have been so touched by people's generosity.

Back to Theatre (Again!)

It has been another one of those days! Wills kept me awake most of the night complaining of pain and asking me to sit him up, only to slip down again and ask me to sit him up...this went on from about 3am until CBeebies provided a bit of a distraction at 6. I was getting a bit short with him and felt pretty bad when I realised later what he was going through - there are only so many times you can cheerfully pull somone up the pillows when you are sleep deprived!

The surgeon on call popped his head round the door at 8am asking how Wills was and what his tummy and stoma looked like. Seeing both were bigger than ever and learning about William's night, he promptly ordered a repeat x-ray and told me the day would be planned from there and that he was expecting him to have a contrast study to see how the dye travelled through William's new bowel. We never got that far. The x-ray showed the obstruction to be worse than yesterday and William was booked in to theatre as soon as the surgical team had seen it. This was a relief as Wills was in loads of pain and I was syringing out several loads of bile from his somach whenever he wretched, even though it was on drainage and filling up bags in between.

The two consultants who had performed William's transplant were both in today so worked together today to try and fix the problems he has been having. This time they were able to see a clear reason for the blockage. He had a hernia at his stoma. The bowel had folded over itself, causing the stoma to swell and blocking the flow through it. As a result, the bowel was full and distended and the only was was for this to be relieved was for everything to go up to the stomach. We are all really hoping that this will be William's last trip to theatre and that his bowel will now be able to get to work properly. We are letting it rest over the weekend and hope to re-start feeding on Monday. Meanwhile, he is fully morphined up and peaceful. He is back on 5 IV pumps with an assortment of fluid to re-stabalise him and, of couse, his TPN. He also has several syringe drivers of antibiotics, antifungals, antivirals.. all part of the usual protocol although some are being kept going a bit longer due to William's trips in and out of theatre. It has been a very tough couple of weeks and Wills really deserves a clear run now. He hasn't felt well enough to do anything at all really since his transplant. Even his beloved engines have been left untouched.

My Godfather appeared at the hospital just as William was about to go to theatre. This was a lovely surprise and I was treated to a lovely lunch (Christmas lunch and pud, a real treat!) and some great company. ALthough I would rather it hadn't been a theatre trip that enabled it, it was really nice to get out of the hospital and enjoy a conversation over a nice lunch. It is very isolating being up in a new city, away from all your friends and going through all this. Paul has been away on tour all week and can't get up until the middle of next week. This blog is great for being able to stay in contact and I get so much from all the comments. I do get a real sense that people are rooting for us and sharing this journey with us and it means a lot. Thank-you all. I hope we have some more good news and smiley photos to share from now on in.

Our Nemesis

I am sticking with the snakes and ladders analogy. I like it. In fact, if I ever write a book about all this that would be the title. We have a nemesis snake that just won't let us progress from the first line on the board. We get along a few squares and there he is. We land on him every time and he takes us right back to the start again. William's stoma has stopped again and the poor thing was wretching and in loads of pain until we put his jej and gastrostomy tubes onto free drainage. Several hunderd mls of bile poured out of each so his diorylte has been stopped again and he has been left on drain. Off we went to x-ray yet again. It seems William has some more kinks and/or adhesions in his bowel, preventing things to run through properly. We are all hoping that it will decompress with the drainage and, in doing so, shift a bit and correct itself. If not, Wills will have to go back to x-ray for some contrast studies where dye is placed in the gut to follow it's progress and see where any blockages are and how severe they are. There is the chance that he will end up back in theatre again if this doesn't resolve itself.

We may be stuck on square one with feeding but William is doing heaps better in himself. He made some videos with the school teacher and I am hoping to be able to put them on the blog so he can say hello. Physiopherapy is a huge part of transplant recovery, especially for someone like Wills who also has his mild cerebral palsy. He did really well today and sat on the edge of the bed to play catch with a nice soft ball that won't hurt his tummy and even sat out on a bench and did some wobbly stands. He needs a lot of encouragement to get going with things as he is feeling yukky and weak and would rather stay lying in bed all day. Some careful coaxing is beginning to do the trick. We are making progress on his general recovery but, of course, should he have to go back to surgery, we will go back a few squares here as well.

We are still definately in need of all those prayers and positive thoughts as there is a lot of uncertainty with William's bowel and its somewhat irratic and lazy behaviour. I do feel optimistic though. When it works, it works well with nice healthy stoma output containing no sugar. His gut is absorbing and moving nicely when it gets the chance. I am pretty sure this is all surgical complications but will feel a little nervous about things until it all gets working consistently. In the meantime, I am gettin good at spotting signs of 'acidosis' when William's blood becomes too acidic, usually following big losses through the jej tube as there is a lot of sodium bicarb lost there. The nurses are getting more than happy to ask the docs to request a blood gas when I tell them I think he is going that way. He is about to have a bicarb infusion now as I detected that tell tale breathing pattern. At least he is chirpy though and chatting to nurses rather than telling them to go away. William is getting there. We just need to negotiate our way around that darn snake so his bowel can catch up with him.

Patience!

Wills is still kind of stable but took a teeny step back today from 20 mls to 10 mls per hour diorylte. His gut stopped working again during the night with only the tinyist of dribble coming through his stoma. At lunch time, he was wretching violently. He can't be sick as he has had a Nissen's Fundoplication - an operation to stop stuff refluxing up from his stomach. I use a syringe on his gastrostomy when it is clear he is trying to be sick and got 180 mls back. This was where all the diorylte had gone where it had mixed with all the medicine that he had been given during the day and a bit of bile. No wonder he was feeling sick. The feed was turned down and Wills was much more comfortable. It is horrible to see him with tummy pains and feeling sick as his bowel has its ups and downs. There is no way around this but it is yukky and unpleasant for him.

Just in the last hour or so a little gas and stuff has passed through the stoma. You easily get pleased with small things on this transplant recovery road. At least his gut is getting there, all be it very slowly. I know there are a few more snakes and ladders to come yet. We are having to take William's feeding very very slowly at the moment and, for the mean time, he is on full TPN which will be increased today to give him some more calories. This is not the direction we are hoping to go in but everyone is confident we will turn around again...I would finish this sentence with 'soon' but I am not going to say it - let's just leave it that we will get there eventually! I have been looking for a perfect song to put some photos to for a Christmas video card. I am beginning to think it will have to be 'Patience'!

William asked me today who gave him his new tummy. I said the surgeon to which he replied 'No, Mr S put it in for me. I said who gave it to me!' I wasn't expecting that so soon. He is a clever little thing and has been lying there quietly listening to all kinds of conversations. For now, I will wait until he asks again, seek advice and start thinking about the best response for him at his age.

A Stable Day

It has been a settled day today. The doctors are pleased that William looks 'stable' now and they hope he will remain so for a while longer before we can all declare that he is over his little blip. His bowel is working again, much to my relief, and we are going to try him with 10 mls per hour of diorylyte tonight with the hope that we can get back to where we were with feeding over the next few days.

Poor Wills is still very sore from his second op and a bit nervous of people coming in to him. He is getting better as he recognises more faces and begins to discern what will hurt and/or be unpleasant and what will be OK. He still hasn't really started playing with his toys or enjoying his books yet but I am sure that will come soon. He is very weak and that is going to take a bit of time to improve on. The physio comes twice a day but he is struggling with sitting unaided at the moment. His cerebral palsy, mild though it is, will slow down his physical recovery but we are working on it and encouraging him loads.

Thanks to all who have been sending cards, letters and gifts. William is so enjoying receiving them. They were on his notice board but we moved them onto the bathroom door today so he can see them better in front of him, and because we were running out of space!

Talking of gifts, I managed to get most of the main Christmas bits and bobs for the children today, thanks to Argos reserve and collect service. It isn't my preferred method of Christmas shopping as I like to make a day of it and enjoy the atmosphere. Birmingham is just too crazy busy to make the atmosphere anything like enjoyable and I can only shop in 40 minute blocks while the teacher is with Wills. Our lovely CHASE nurses are coming for a day next week and that is ear marked for a nice mooch round the German Christmas Markets with a sausage and a mug (or two..) of gluwein! This Christmas will feel very different for us all. The material trappings are very low on our priorities. I am just looking forward to having all my children together with me. We are preparing for our third Christmas in hospital, two in a row. This year, I won't be complaining as this stay is giving us hope for the future. I miss my church and my friends at home but whenever I feel at all down about it I am reminded that there is a family out there preparing for a Christmas without a loved one. A family to whom we have every future Christmas we spend with William to thank for.

Snakes and Ladders

I still have to go back and tell our story from leaving Chelsea to travel to Birmingham. I haven't forgotton and it will appear. However, today I am finishing (and yest I will finish!) that article that was due on Friday and that I got extended to today. 'Wills is settling so I will easily get it done in the weekend, especially as I am here on my own this weekend' thought I. As Em pointed out in her comment earlier, you can not make such assumptions about transplant recovery. This weekend had hardly a settled hour in it.

So, I must be brief and get on. This week is a new week and I know there will be more ups and downs but I hope we at least travel in something aroaching an upward trachectory. I do need to take things a moment at a time but I am more than expecting we will be here for Christmas so have placed a mini tree on our window sill. I did buy Wills a chocolate Advent calender but it is a bit ambitious to think he will be able to enjoy it for a few weeks so I bought him one with little pockets today. Each one has a tree decoration or something from a craft activity in it so he can either add to the tree (which currently has only faulty lights that need returning but that Wills insists stay up until I go and do it and one star on it) or we can do the craft activity. In place of the item we remove, William and I will write a sentence or two about our day. That way, we will have a record of this unique Advent captured ready to remember next Christmas. Today, William wanted to write 'I am sad' to which I added that this was because of his tummy ache from the second op.

They now think that his bowel was kinked and the laparotomy unkinked it. There were also a few minor adhesions. He seems a lot better today, despite the pain from another cut right across his existing scar. He has been very sore but his colour is better. His stoma has not really got going following the surgery and we will all be more relieved when it does. Until that happens, William remains off feed and on 24 hour TPN. At least this should just be temporary. It would have been a fantastic moment when he came off TPN if all had gone well. It will be even more so now. The surgeon said today that, as far as recovery and feeding goes, we are back to the start, the same place as we were on transplant day. They will be taking things a bit slower now but we should get there eventually.

I no longer think of transplant recovery as a rollercoaster. Rollercoasters are fun and exilirating (although I am terrified!) and you know where you will end off and that it will stop. I think of it now as a giant game of Snakes and Ladders. It is unpredictable. You never know if today will see you climbing a ladder with better progress or see you sliding back down that big snake that takes you from one of the squares close to home right back to the start again. You may get to the end with just a few short snakes and ladders, that would be the best you could get. Or, you could hit long snakes and ladders the whole way through. This has been our journey through the first 10 days. I hope we avoid the dramatic ups and downs from now on in.

Update

Wills is back from theatre and the news is positive. They checked everything and found the bowel to look healthy with good blood supply and drainage. There were no holes or leaks but they did find a few adhesions, where both sides of the bowel had stuck together. One of these may have been causing a blockage. His bowel has been cleaned out and they were able to close him straight up so we are back on the ward. The nurse tonight wants to be able to get to both sides of him in case of any post op emergencies so I am confined to sleeping in the bathroom! Small price to pay for having him sorted out this evening. The surgeons were looking very relieved when they came to talk to us. Wills will be sore for a couple of days but we are all hoping things will settle down soon and we can get back to getting his new gut feeding again.

There are still some concerns about rejection but his bowel looks healthy so, it this is the case, it should not be too serious. He will have his routine biopsies tomorrow and Thursday and any necessary action will be taken according to the results. Poor Wills has really been through it and deserves a good run from now. Thanks for all the positive thoughts and prayers. It looks like they are working but we still have a journey to travel.

Back to Theatre

William is back in theatre. He has been much better in himself today as we are draining him from his jejenal tube and gastrostomy so he is more comfortable. The jej tube started draining blood yesterday evening and has been doing all day. The stoma did begin to work, all be it somewhat watery, (thanks for the prayers and positive thoughts) to the surprise of some. We were told we were not out of the woods though and he stoma was still very swollen. We went for a CT scan this afternoon which showed some air in the abdominal cavity behind the stomach. This could be due to a perforation from the jej tube in the new bowel or could be a leak from the join between the graft and the stump of William's existing bowel. They are now looking to see what is going on and trying to fix it.

The scan also showed all of William's bowel to be swollen. The bleeding and swelling could be due to rejection and so we may have to start a more vigorous treatment fort this.The team are fantastic and the surgeon who did William's transplant came in this evening to take him to theatre even though he is not even on call today. We are in the safest of hands.

Poor Wills has been through so so much. I so hope this is a more positive week for him.

Prayers Needed

I spoke too soon this morning. This shows the rollercoaster ride that is the immediate weeks post transplant. At the moment, William's new bowel is not working at all. We have been to X-ray each day but don't know if this is due to a kink high up in the small bowel, some imflammation, rejection (although stoma biopsies have been OK) or it is just being lazy! There is a 90% chance it will be fixable and get going and 10% chance the graft has failed - stats are on our side but, of course, no-one can make any promises. If things are worse of stay the same they may take him to theatre for a laparotomy to see if there is anything obvious going on. Please pray that William's bowel gets going or that we find there is something wrong surgically that can be fixed. We need to be in the 90%, I can't believe we could go through all of this for it to fail.

Another Quick Update (full post later)

Will update properly later but YAY - William's bowel started working itself overnight. His stoma is still very swollen but slowly getting back to how it was. He is still off feed and on free drainage from his jej tube but, at the moment, no need for surgery.
Thanks for the prayers xx

The Best Birthday Present Of All!

It was my birthday today and the best present of all was having all my children with me!!! It was lovely to see the girls. I miss them so much. We left Wills with Paul and went off for lunch and a quick gluwein at the German Christmas market with Mum.

Wills was on good form today but in pain again. He declared that it had been a good day for him but a bad day for his tummy. He was chatty and getting close to his self. His liver enzymes are now improved, a great relief to me and the team. However, his stoma has completely stopped working and we had to stop his feed. Once again, we were down at x-ray. William insisted on taking all his lovely balloons with him, much to the amusement of everyone we passed en route. The surgeon came to see us when we got back and asked me to put the tube that goes into his jejenum, the bowel just below the somach, onto fre drainage. Immediately, right before our eyes. 250 mls of bile poured out. William's stoma is very swollen and the surgeon thinks the end of the bowel may have been punctured in the routine stoma biopsy that happens twice a week. Wills is off feed for the time being and we will wait and see what happens over night. If the stoma is still not working he will have a CT scan and may have to go back into theatre. This is a dissapointing set back but that is all it is. His bowel did work and it will again! It is sad for him that he may have to face another painful operation though.

Minor complications

I haven't yet finished the piece I need to sumbit tomorrow. I have barely started it in fact so this is a quickie.

We did get some smiles today (as you can see in the post below) but it has been another day full of reminders that the recovery from a transplant can be unpredictable and rocky at times. Wills woke this morning in much less pain but very drowsy and breathing over 60 times a minute. I was a tad worried and, once again, the answers were in the blood test results. He has 'acidosis', his blood is too acidic. He has had an infusion of sodium bicarb to correct it and is now having a phosphate infusion as his levels are low. It is normal for the body to need some time to rebalance after transplant. Wills is just taking a little longer to get there. His kidney function is a bit down, not surprising given the huge amount of meds he is on. One thing that is confusing the team is that his liver enzymes have taken a bit of a high jump. They didn't do anything to his liver so we don't know what that is all about. I am anxiously waiting the repeat test results in the hope they are not so bad. If they are, he will have an ultra sound tomorrow in case it is a surgical complication.

A quick google (always dangerous in these circumstances) threw up the possibility of graft versus host disease. This is unlikely as William had another stoma biopsy today and that was fine. His output is virtually non existent though so I am concerned about disruption to his bilious flow. I must stop worrying as this could all be nothing. I do rather think it may have something to do with restarting TPN and having fat every day. We only had it 3 times a week to protect his liver. He is not on the liver protecing drugs either (the lovely 'urso'). It is hard not to worry about possibilities and just take it as it comes. We are in a specialist liver unit so in the right place. Trust William to throw up his own unique little complication!

Pictures of an Amazing Week

Wednesday: On the way to Birmgham and pretty unwell too!

Thursday: Shortly after transplant


Friday: The morning after transplant

Saturday: First sips of water from a sponge

Sunday: Sipping from his new Thomas cup

Monday: School wasted no time in getting William going again

Wednesday: Distended and in lots of pain

Thursday: One week on, a few minor complications but doing great! First smile in a week!!!

A Bit of a Bad Day

This is going to be another quick blog. Partly because I am exhausted and partly because I want some time to reflect on the week that has just passed before I fall asleep - reflections which will take me nicely to the point at which I left our transplant story, some of which I am sure will make it onto this blog tommorrow. I also have a piece of commissioned writing to get done by Friday.

So, a brief update. Wills has had a bit of a bad day today. All is OK but he has been in a lot of pain and distress. He was blown up like a football all day and had a lot of air in his tummy. He was in so much pain we had to make sure all the air was in his bowel and not around it - i.e. to rule out a perferated bowel. This created some worrying moments of deja vu as we were in x-ray at about the same hour as we were exactly a week ago for the same reason. I couldn't believe for a second that we could be in the same position a week apart, the same that is except with a different bowel. Thankfully, this time there was no perforation, just gas and distention throughout his gut. We were planning to up his feed by 5 mls a day but we have stayed at 10 mls for the third day in a row. He is doing OK but his gut just needs a little more time to really get going. His stoma losses are a bit irratic and rather green and watery. His bowel is already performing heaps better than his old one ever did and will carry on improving.

When the blood test results came back this afternoon, it became clear partly why William has been feeling so rough today. His tacrilimus level was far too high which would have made him feel very unwell. His IV has been stopped overnight and he will have half the dose tomorrow. It is going to take a little time to get his levels stabilised and a regime worked out for him.

The other thing we were warned about today is rejection. William has no signs of rejection yet but it is early days. The peak time for initial, early acute rejection is 10-14 days. We are on day 6 so next week will be crunch time for that. There is no reason why William should get any rejection but it is very common in small bowel transplants, happening in about 80% of children transplanted and it is treatable.

As I write, William is much calmer but stil fitful in his sleep and waking frequently. His sleep patterns are very disturbed at the moment. I am hoping he settles and sleeps well tonight and wakes up more comfortable and feeling more like himself tomorrow.

I haven't mentioned our donor for a while. I now know a little about the donor and family. Of course, this is not the topic for the blog. The transplant co-ordinator explained the process for writing our thanks and advised that we leave it a month or so to enable the family to grieve, for us to come to terms with William's transplant and for Wills to get better so we have more to thank them for. I do feel bad that we have this tremendous gift and I haven't said thank-you but I trust their experience. I have chosen a card and have it ready in my journal, together with the piece of paper I was given containing the details of our donor. The family are in my thoughts and prayers tonight.

Getting Into Routine

We are slowly beginning to settle into a routine here. It still seems a little surreal but we are getting used to the people and way things are done here. William's sleep is still disturbed but we are getting closer to his normal day and night patterns. He is in a lot of pain and discomfort, mainly from the operation but also because he is a bit colicky with the introduction of feeding. His stoma output is a bit on the watery side and a bit high (although less than half of the best days prior to transplant) so we are sticking at 10 mls per hour for now. He has not really fancied his water today, probably because he is a bit gassy and bloated. This is normal following any abdominal surgery, let alone a transplant. It can be a bit disheartening as it is not unlike his reaction to feeding in the past. However, there are huge differences. He is uncomfortable but he is absorbing it. These are symptoms of a bowel getting going again after a huge trauma of being removed from someone and put into someone else. No-one is keen to push William's feed too quickly which is no bad thing. We will take things slowly and steadily and may have to go back a step or even stop feeds for a while if that is what the bowel needs to move forward towards eventually coping with full feeds. He will get there but we need to be patient.

We had a lovely surprise today when a big white box arrived containing a lovely Thomas balloon from Becky, Adrian, Seren and Dylan - thanks so much! William had a few cards too which brightened him up. He is beginning to get interested in things again and loved his time on the computer with the teacher. We also made a dinosour from a 'Charlie and Lola' magazine. It is nice to be doing things with him again. He tends to tire during the afternoon and the pain sets in more then. When he is very sore with a gassy tummy I have to sit with my hand on it for him.
In fact, his is going to be a quick blog as he is now awake and wanting Mummy's hand now. I will continue the story tomorrow,

One Step at a Time

Taking things one step at a time is something I have never been very good at doing. I always want to know what is going to happen next and when and how. Today, I am learning that a recovery from a transplant is one of those situations where you have no choice but to take things as they come. No-one can predict what is around the corner. It is a lot like how things were when the children were premature babies in the neonatal unit. Things go well, then they may take a little step back.

William is OK and all is going very well. His temperature has been down today, much to my relief. He had his first stoma biopsy today. The doctor puts a thin tube with something I am going to call the grabber at the end of it and pulls out a sample of tissue. This will be done twice a week to begin with to monitor for any signs of rejection. If there are any, they will move to an aggressive treatment. So far so good, Williams biopsy was normal today!

We have had some minor blips. William's tacrilimous (the main anti rejection drug) levels have been too low so he has been put on intravenous (IV) 'tac' for a while until his gut is ready to absorb it all. This is a slow continous infusion of 1 ml per hour. William's feed is up to 10 mls per hour. The great news is that there is still no sugar in his stoma output so he is absorbing. However, his stoma output is, apparently, too high. To me, it is great at around 400 yesterday (a bit more today) where as we were getting 2 litres from his old bowel! The surgeon wants his output to be a closer match to the feed going in, only 120 mls yesterday. The 'high' output has also led to some of our old problems of low potassium levels and dehydration so Wills is not yet ready to shed any of his 4 IV pumps and 4 IV syringe drivers just yet. He is in a proper tangle with it all. Every now and then, his stoma stops working for a while (there is a medical term for this but I have forgotten it) causing painful spasms. This is something they have seen before and will pass but his feed has to be stopped while it is happening. It may be that he goes back to 5 mls per hour tomorrow. We have been told to expect two steps forward and one back. As long as we keep going in a forward direction overall, I will be happy.

My thoughts have been with our donor family today. I am keen to learn more about William's donor and write and initial thank-you. It is beginning to feel like we have received this amazing gift and I can't really fully enjoy it until I have said thank-you to the people who gave it to us. I imagine they will be preparing for the funeral this week and I want them to know we are thinking of them. This is the side I still find incredibly emotional and get very teary whenever I think about it. I have a feeling a lot of my emotions from the past week, and before that, will pour out while I am talking to the donor coordinator, hopefully tomorrow. Paul has now gone off on the tour to Norwich and I think it is all beginning to sink in. The last few days have been so surreal that I almost think I am dreaming sometimes.

Thanks Rebecca and Rebecca for asking about sending things to William. He loves getting post so will definately appreciate it. The address is:

Ward 8
Birmingham Children's Hospital
Steelhouse Lane
Birmingham
B4 6NH

Now where was I with our story...ah yes..

So, there I was, standing in the operating suite being told that we had a donor for William. That is one of those scenes I am never going to forget. It was so strange. We had only been having a light hearted discussion about this scenario a couple of hours previously and here it was happening. If I didn't know better I would have thought it was a set up. I laughed, cried, gasped. I just didn't know what to say. William had been so unwell that afternoon and I couldn't believe what was happening. I didn't want to believe he would get his transplant. I was so worried we would get there and be told he wasn't well enough to go through with it. The team were not going to discuss whether to wake William up to go or to leave him unconscious and transfer him in an intensive care ambulance. He had already had two aneasthetics that day and there was some debate over what was safest. To keep him under the second until after the transplant or to wake him and give him a third first thing in the morning.

I left them to their discussion and went back to the ward to sort out the mountains of clutter we had accumulated. My feet were not touching the ground. I didn't know what I was doing. I ran into the ward. The nurses already knew as there had been a lot of discussion before I was even told. Everyone was excited and nurses from the other ward, where we had been during our earlier period of isolation, kept coming over to wish us luck. I shouted to the other long term parents I had been sharing my life with over the last few weeks and they came running with hugs and offers to help. I don't know what I would have done without ML and J. My head was in shreds and I had no idea what I was doing. I just wanted to get to Birmingham and find out what was going to happen. I also wanted to see William. It seemed so strange that all this was going on and he was alseep upstairs. ML and J helped me pack a few bits on top of the pre-packed transplant bag. I was going to take it all but was told to only take essentials as they wanted space on the ambulance in case of any emergencies. As a result, there are lots of things we really could do with among the clobber retrieved by Paul's parents.

It seemed like ages before I was called back up to William in recovery. They had decided to wake him but we were going in an emergency ambulance with a nurse and anaethetist, just in case. The ambulance crew turned up shortly after me. I didn't realise we were going from there so ran down ot get my stuff - ML and J were life savers again, helping me up with it all. When we got back, the crew had gone. They had been pulled from our job and another crew were due in 5 minutes. That turned out to be nearer an hour! I was worried as I knew the op was scheduled for 7 am and time was passing fast. I really wanted to get going. The surgeons who were about to operate on William stood by with support. Finally, the crew arrived and we loaded up.

I was told about the call just after 9pm and we left after midnight. We needed to get to Birmingham ASAP so the blues and twos were used. There was a traffic jam on the M1 and it was exicting seeing traffic move to the side to let us through. One of our favourite nurses which made me feel much better about it all. The journey seemed to take ages. William's heat rate was high and he was a bit warm. I was still so worried that they would not think him well enough for transplant. As I said at the beginning of today's blog. I hate not knowing what is coming, especially when there was so, so much at stake.

A new roller coaster ride

It is all really exciting - William's new bowel is absorbing!!!! His stool output was tested for sugar and there is none there so Wills had absorbed all the diorylyte. His stoma output is fine and looks normal, not like the coloured water he used to loose by the litre load. All is going very well. He is now on a special feed which he will be on for he next 3 months. He is on this 5 mls per hour and is also on 10 mls per hour of water which he drinks through sponges or straws. It is wonderful to see him tolerating feeds. The feed will now be gradually increased and his IV fluids weaned down.

We do have a few little worries though. William's blood pressure is a bit high but he is now on medication for that and it is settling. He needed a bit of oxygen this morning but it looks like it wa due to being a bit overloaded with fluid. He also had medication for that with good effect. The main concern is that he has had a highish temperature all day, around 38 which is not too bad but could be signalling the beginning of infection or rejection. It is unlikely rejection because it is a bit early for that and his bowel is performing so well. However, 80% of children who have small bowel transplants do experience some level of acute rejection so we are no means home and dry there. Time will tell if it develops into anything and, although he is doing so so well, I will remain a bit anxious until his temperature settles. The liver consultant on this week does not let you say they are doing well because you never know what is around the corner. We are learning to ride a whole new rollercoaster now but, so far, the ride has been pretty smooth. William did not arrive in the best state for a transplant, as you will see if you read on, and a bit of infection is probably to be expected.

William is still a bit upset by it all and is still speaking in 'gruntish'. It is a lot to take in and I think he will feel a lot better when he is off the morphine. We now have our cubicle so I am making it cosy for us. We have a bathroom which is already taken over with dripping washing. The cubicle walls are covered with a lovely mural of dinosours. It is really lovely, which is just as well as we may be here for some weeks. We are settling into our 'home' and getting to know the nurses and some of the other long term families. We came back to the ward on Friday afternoon so have settled in during the weekend. Tomorrow, we will begin to learn the daily and weekly routine here and get into one for ourselves. At the moment, William's sleep pattern is totally out of whack. He tends to dose here and there and day and night is the same.

Now, to get back to that cliff hanger from yesterday... Oh, and just before I do. My mobile phone is not getting reception in our room. As William is in isolation, I will be there most of the time. I will get texts and messages when I step out to get meals and make cups of tea etc but won't get them straight away.

I got back to the ward to find the junior doctor on the phone. I asked what was going on and she said the consultant was coming to see me. I am not at all good at sitting and waiting when I know something is going on so I hung around to try and find out. The registrar arrived and started looking at the x-ray. I asked if I could see too and he showed me what was clearly quite abnormal though I had no idea what they could see in it. He told me that William's abdominal cavity was full of air, indicating that his gut was perforated somewhere. It was a surgical emergency and the surgical registrar would be down soon. Next, our consultant came and explained it all to me. William's gut had most likely been torn when they pulled out the back of the old gastrostomy. The surgical registrar came and said he was not sure if William would need an immediate operation. He would be back in a couple of hours with the consultant, the same one who dilated William's illeostomy earlier in the day as well as forming it back in January. The anaesthetist then came to discuss pain relief for William through the night and start him on morphine as he was in a lot of discomfprt. He looked terrible and I was a bit dismayed to hear her say there were no immediate plans for surgery. William's TPN was stopped and he was put on fluids. He was already on sufficient antibiotics because of his line infection.

About an hour later, the surgeon came and had a feel up William's illeostomy. He found it had come away from the abdominal cavity and was torn. William had not had any illeostomy losses since the scope and usually looses a couple of litres (well he did, not any more!). Some of this was draining from his stomach and jejenal tube but a lot could be escaping into his abdominal cavity. He explained that William needed an urgent operation which would take place as soon as they were ready in theatre. He was to have his stoma revised - about 5 cm of bowel removed and a new stoma formed. It was a big op of about 3-4 hours and he would have to go to the High Dependency Unit afterwards.

It suddenly occured to me that he could not be called for transplant in the middle of all this. I rushed out to ask about it and found the gastroenterology consultant talking to the surgeon. He gastro consultant said Wills would have to be suspended from the transplant list for a couple of days but the surgeon was keen for him to remain on and said he would have no concerns about him going for transplant the next day. If he were called during the procedure, he would make good and send him on his way. I still felt William was in no fit state for a transplant but, as the gastro consultant said 'We will still be waiting in 6 months time!' - that has got to go down as one of the famous last words of my lifetime and I can't wait to tease him about it!

I took William up to theatre and to the anaesthetist who had earlier come to sort out pain relief. She had gone home and was on call, luckily she had enough time for dinner before being called back in for William's op. As it was now evening, we were up in the main theatres, rather than the paediatric one, so we had to take him up in his cot. There were loads of papers and magazines behind it so I decided to have a big sort out before settling down to eat some tea. I had only just got going when a nurse came in and told me that the surgical registrar had called to say they want me up in theatre. William was OK but they need to talk to me. I thought they may want to ask me to sign consent for something else they had discovered needed doing or perhaps the tear was not as bad as they thought and we could get away without the op. As we got out of the lift, the registrar was walking towards us - in scrubs but not in theatre! That was when I got the BIG news. They had put him to sleep but had not started the op...because they had received a call from Birmingham to say there was the potential for William to have his transplant. They were in discussion with the surgeon at Birmingham about what to do about it and they felt I should be involved. When I got into the theatre suite, I was met by the consultant surgeon who told me they had decided to send William up to Birmingham and take it from there.

Thirst and The Beginning of the Story

"I'm thirsty" and "It hurts" have been the only things William has had to say today. He is very sore and mainly talking in wines "Uh Aagh" meaning "it hurts" and so on. He is allowed 20 mls per hour of water to sip and that has been the absolute highlight of his day. No matter how rubbish he is feeling, he will always perk up for his water! Paul and I both searched Birmingham for a Thomas cup and bowl for him to use to dip his sponges into the water. Paul finally found a lovely set in Argos, just 5 minutes away! Just in case, I got him a space man beaker with a built in straw so he has been sucking on that too. It is lovely to see him taking something by mouth for the first time in 3 years and it was fun buying him some special things to drink and eat from when the time comes. It wasn't such fin battling with the crowds though - Christmas shopping is well and truly on the go in Birmingham.

William is continuing to do well. Of course, he is a bit sore. He hasn't really wanted to do anything except lie and look around. He hasn't even wanted Thomas stories and only watched a video once. He has, however, wanted water whenever it was offered and demanded it when not.

His blood pressure and heart rate have been a bit high and he is breathing rather fast. I am sure the pain is contributing to that. As I am writing, his oxygen levels are on the low side of OK so he may need a little oxygen wafting in his direction. This is probably due to a combination of the morphine, pain and swelling as the new bowel gets settled in and starts working. It is working too. It is funny the things that can excite you. Paul and I have been very excited to see William's stoma move to let the stool out. His old one never did that and we had no idea you could see the peristalsis in the stoma. As his bowel is clearly working William was able to start a tiny bit of feed today - a continuous infusion of diorylyte running at 5 mls per hour into his jejenal tube. He seems to be coping with that fine. His stoma losses are still very watery but there are semi solid bits within it. Already, his new bowel is doing great. It will be a slow process building up and establishing feeds but he has got off to a great start.

The main concern today is that he has a bit of a high temperature. I am sure this is all due to the operation itelf but we have to make sure he isn't brewing an infection. He anti-rejection drug level is too low so his dose has been doubled. If the level is still low on Monday he will have to have the drug intravenously until he is able to absorb it more effectively. These are all teething problems really but have served to remind us not to get too far ahead of ourselve because he is doing so incredibly well. We still have a long journey to go on and there may be bumps along the way.

William is on heaps of oral and IV drugs. Half of them I have never heard of. He is also on four different fluid drips. It is strange for me to go from being totally on top of his condition and treatment and doing everything for him to sitting watching a complicated regime that I have no idea about. At least I can still change stoma bags and have the excitement of giving him his oral meds and water. So far, the oral ambisome is his favourite. He did refuse to take the tray full of 8 syringes at bed time. I'm not surprised, it must have looked daunting and he was very tired.


So, now back to the beginning of our transplant story.

There was going to be quite a blog about Wednesday before we had any idea that we would get the call for William's transplant. The Chelsea and Westminster team were keen to have a look at William with the endoscopy to see if there was any obvious inflammation that could be contributing to his 'leaky gut' and treatable with steroids. There was a cancellation on Wednesday morning and so we found ourselves off to theatre at 9 am. I was told it would only take half an hour or so and was getting wuite concerned when William was still there three hours later. Someone had seen the gastro nurse specialist, dressed in scrubs, rush to his room to collect a box and rush back. Later, he came to see me to explain that they had seen a nasty blackened piece of plastic backing from a gastrostomy tube that had been lost in his gut for over 2 years. Having found it, they were keen to get it out so the surgeon had been called in. Of course, if William's gut had worked properly this would have been passed through rather than just sitting there but it had finally found its way close to the illeostomy. The illeostomy itself had narrowed causing a 'stricture' and that also needed dilating. So, William's endoscopy had turned into a minor surgical procedure.

He was slow to wake after a longer aneasthetic than planned. When he did wake, he was in extreme pain. He was given a shot of morphine and dosed a bit. However, throughout the afternoon he became very unwell with a very high heart rate above 200 and very sweaty. It was the gastro grand ward round and the consultant took one look at him and sent him off to x-ray. He had a chest and abdominal x-ray and we were told to wait while they looked at the pictures. Soon afterwards, the radiographer came out and told me their doctor had looked at them and was on the phone now to William's doctor and we were to return to the ward immediately. I could tell that something was pretty wrong...

Quick Update

Thanks for all the lovely comments and text messages. It is wonderful to know how much suport we have. William is doing really well and is out of intensive care!! He is such a little fighter. He is still in a lot of pain but is nodding and shaking his head and saying the odd word here and there. He is sleeping most of the time but we have had a Thomas story and he has snoozed through a couple of videos. I will tell the whole story but I know people are anxious for the latest news for now.

Wills is taking his nystatin medicine orally and loving how it tastes!! It is the first thing he has taken in his mouth for 3 years!!! I tried to put up some pictures but blogspot is not behaving. I will add them when I can.

Paul and I had no sleep on Wednesday and only had a chair to snooze on yesterday so we are pretty tired. I am going to sleep pretty soon. There are no cubices on the ward until because they have done loads of transplants lately. For the weekend, Wills and I have a 3 bed HDU unit to ourselves. We should get a cubicle early next week but William is in isolation so we will have to be by ourselves in any case.

From tomorrow, I will start updating and telling the story from the beginning. Our call came at an absolutely crazy time when a lot was happening to Wills so there is quite a story to tell.

Our call came when we least expected it!!!

Someone told me a couple of weeks ago that we would get our call for William's transplant when we least expected it. Well, yesterday was quite a day!!! I will post properly later with the whole story but for now, the big news is that William is in theatre having his new tummy. He went in at 7am this morning and we are expecting an update at about 12.00pm when they will be half way through the op. I am excited, happy, relieved, worried...and very sad and thankful to the donor family. My thoughts are with them.

Just a quickie...

It has been a busy day. The lovely Emma from Live Life then Give Life called me this morning to ask if I would speak to Channel 4 news about the opt-out decision. Within a couple of hours, William and I had been visited and interviewed. I switched my phone on to find a message from ITV news who were also hoping to come and interview us. They ended up sharing Channel 4's footage and we ended up on both lunchtime news bulletins. ITV were planning to interview us in the afternoon for the 6.30 news but called to say there was enough material among that Channel 4 had recorded and they are using that this evening so watch out for us.

The channel 4 piece can be seen here The ITV piece seems to be on their news website but I can't click on it at the moment.

Our interview was over in time for me to see the lovely Emily and Ubaid's wonderful Mum on This Morning. Well done both of you. You were fantastic!! Emily was on the ITV lunch time news too looking as professional as ever.

Let's hope all this awareness gets people thinking. This Morning ran a pole and 68% were in favour of the law change. I hope these people have now registered as donors!!! It would be fantastic if some of those on the waiting lists received their organs as a result of the current media attention.

Presumed consent for organ donation is rejected

Transplants and organ donation are on the front page of The Times and The Telegraph today and that can only be a good thing for us and everyone else waiting for transplants.

Last year, 3100 transplants were done in the UK. That seems a lot, until you read on to discover that 10 000 were waiting to get that call, giving it a 1 in 3 chance to have a transplant if you were waiting for one last year. Sadly, 400 people died as a result of being one of the 2 who were never called.

Gordon Brown was hoping to introduce a change of law so that, rather than being registered as an organ donor, individuals could register their preference not to be a donor. Anyone not doing so would carry 'presumed consent' although no organs could be donated against the wishes of the family. This would have led to more organs being available for transplant. I reflected on my feelings about this some time ago and wrote the following:

WAITING FOR SOMEONE TO SAY YES

Within the next few weeks, a Government task force, created to assess the possible impact of a change in the legislation surrounding organ donation will announce their recommendations. Throughout the year they have been debating the move from the current ‘opt in’ system of registering as a potential organ donor or carrying a donor card, to ‘opting out’ or ‘presumed consent’ whereby everyone would be seen as a potential donor unless they register or carry a card to express their desire not to. The debate was fuelled by statistics such as the 1000 or more people who die each year while waiting for a suitable organ to be found.

Joining the transplant list offers you a nothing more than a hope that you may, one day, get that call to say your life saving operation will be going ahead. As time goes by, you become sicker, the transplant becomes all the more urgent and the uncertainty becomes all the harder to bear. At least, that is my experience of being Mum to a four year old child currently waiting for a transplant he very desperately needs. We joined the list a few months ago but have known for three years that it would become necessary sooner or later.

Before we joined the list I was an avid supporter of the move to an opt-out system of organ donation. Amongst all the complicated and emotional thoughts and feelings I have had spinning in my head since we joined the list, I have realised my ideas about the opt-in or opt-out debate have changed. It is half-term this week and the Christmas holidays are not too far away. More transplants happen in holiday time. I have to reassure myself with such facts but I struggle with doing so as I am only too aware of what the thing I hope for every day means for another family. Last week, I shared how upset this makes me and was told to remember that I am not waiting for someone to die. I am waiting for someone to say yes. I am waiting for someone to give my son the best gift he will ever receive. A compulsory donation may come quicker but we would be praying and waiting for something very different than for someone to say yes to making that gift.

A strange 48 hours

The last few days have been strange. It is likely they are going to take William's new line out tomorrow. I say likely as that is the way things are today. Yesterday it was definate but his blood tests are improving suggesting the antibiotics are kicking in and at least supporting his body in coping with the infection if not killing it off. I am waiting to hear if this is enough to convince the doctors to leave the line in for a bit longer. They are applying for funding and permission to try the immunoglobulins and I feel we should at least try something new before pulling another line when it is so likely a replacement will be infected as quickly as this one was.

What was particularly upsetting is that tomorrow is 'D's' funeral and I really want to be there to say goodbye and support his family. If William goes into theatre I will, of course, have to stay here. Either way, I think tommorow will be an emotional day.



The last 48 hours have been emotional. I was almost in tears when I was telling the ward sister here about the little girl (who from now on here I will call Sally but it isn't her real name) getting her transplant. From day to day, I pretty much keep a lid on my emotions. Hope and Ellie have both asked me about that but it is important to keep going. It is when other people are going through things that I tend to let it out as it is more controlled that way. Once the floodgate is up I, of course, let it all out in spectacular fashion and feel much better for it. I know this will happen if I make it to the funeral. It will start off with tears for D and the family and once it has started it will all pour out. Sometimes I feel guilty for that but I know he wouldn't mind. He would have had some funny one liner to say about it I am sure as that was his style. His wife is hoping there will be some chuckles through the tears tomorro as he was such a funny man. There will be I know. The strange thing is that his cancer really bought his personality out. I didn't know him as the man I loved and will miss so much before he had his cancer and started sharing this incredible bond with William.



Of course, Sally's transplant has also been emotional for me. She had a perfect match and is doing really well. I am so pleased for them but I do so much want that for William. I felt a lot better for the blog comments - thank-you. I felt others sharing their experiences with this one gave me permission to feel this way and to be able to communicate it too. I really felt that William could not be called for transplant for a good long time after Sally as it would just be too much of a coincidence. Thanks to 'M' from transplant kids for telling me that someone had a transplant the day before hers and that she knows of weeks when they have done 2 or even 3 bowel/liver transplants. I'm sure there is still the same chance he could get called now as in 8 months time. Everyday is as likely as any other I guess. It is so hard to live this day to day life though. It can be exhausting. I will be so glad to get home and have some normality.

Mixed emotions

It has been an emotional few days. On Saturday, I received the very sad news what a friend of ours died suddenly of complications with chemotherapy for bowel cancer. We all knew his prognosis was not good from the onset but no-one expected him to die so suddenly so soon. He had a very special bond with William as they both had their stomas and a lot more in common than William would have understood. William heard me telling Hope and Ellie and knew exactly who I was talking about. His immediate response was "Who will I watch the football with now?" (the Kick London footballl coaching we are involved with together) followed by a pause, then "I will miss him!" I was surprised how much he seemed to understand. We are all so so sad and will all miss him. He leaves behing a wonderful family who are in our prayers.

William is muddling along but his bloods are not too good. He also keeps spiking temperatures so the difficult decision has been taken to remove his new hickman line on Friday and put in yet another on Tuesday. He can't carry on having so many infections and the team are not at all happy about things. They are looking into some options to try and stop his gut leaking so much. I am hopeful but these treatments are all expensive and experimental and they have to put a case to the Health Care Trust to get permission and funding to try them. They will not cure him but should help him get to transplant.

We have had some good news today. The other child here waiting for an urgent liver and bowel transplant got her call today! She was discharged from hospital here and got called 15 minutes after getting home. I am very very pleased for them as they have waited 8 months. I would be lying if I said there wasn't a bit of me feeling desperately dissapointed that today's call was not for William. I always wanted this little girl to be called first as she has been waiting so long. It is a strange feeling to be so pleased for someone but feeling a bit flat about it at the same time. As news has travelled, everyone has first expressed their excitement and then how they hope William's call comes soon. I kind of think it is unlikely as children's transplants do not happen all that often and one is going on now. Of course, we don't usually know when they are doing transplants and so can't think like that on any other given day. They did 2 transplants in the week we were there for assessment so it doesn't necessarily follow that there can't be more than one in a relatively short time either. Someone once posted in a forum that they always took peace by thinking that their time will come when it is right for them. It was right for this child today. She was home from hospital as well as she gets. The right time for William will come too one day.

Would you say yes?

We were told today that William is too unstable to go home for the time being. The team don't think that he is actually clearing his bugs that are escaping from his gut. Sometimes we get one in a blood test, sometimes another and occasionally none but they think they are all there as his intestines are literally leaking their contents into the blood. We have tried every available method to control this. William was allergic to the only one that worked! Although we remain hopeful that we can get some normality with Hope and Ellie soon, there is a strong chance that he will not become well enough to go home until he has had his transplant.



The lovely Emily has written about the issue of children's transplantation and organ donation on her blog and is encouraging debate (you have to look to the post below her lovely wedding photos from this time last year - those smiles show what a transplant can do to a family :-) ) I would be interested in your thoughts. If you were faced with the unthinkable, would you give your child's organs for transplant? What about if it were your child who needed a transplant? The lovely Pauline, from the Donor Family Network told me how positive it can be for people to donate their loved one's organs - to be able to say yes to someone like us. That is what we are waiting for, someone to say yes.



This is what I posted in respsone to Em'sblog:

I think this is something that needs a lot of awareness to be raised. If families could bear to think of the unthinkable for a minute and prepare their thoughts and ideas then it would be easier for them if that ever happened to them.

I really struggle with the notion that I am waiting for someone elses child to die in such a tragic and sudden way but there are two children in this hospital at the moment, both of whom desperately need their transplant. At every ward round we are being told by doctors that we are at the end of the road. All options are exhausted. There is a high chance that William will never now be stable enough to go home until he has had his transplant. We were told that only 25 children donate organs on average each year. We were also told that there are about 3 'events' a year that could lead to William's transplant and, of course, he may not be the only child waiting for the same organ on that same day.

My thanks go to Ubaids' lovely parents for being brave enough to highlight this on our behalf.

Bugs, bugs and more bugs!

We are not home! William got more bugs in his line so we are here for a while longer. His blood tests are not too stable and he is needing more potassium and is back on TPN for 22 hours a day. We need things to be a bit more stable before we can think of home. The main thing the doctor had to say was that we need his transplant and we need it ASAP!