Tuesday, December 30, 2008

Home Straight

Wills is continuing to do really well. So well in fact, that we are now on the home straight. We have now entered the discharge planning stage. With something as complicated as a transplant, it is not a case of simply saying that you are fit to go home and off you go with a bag (a very large bag) of medicine. William's initial post-transplant care will be complex and involve a lot of people here in Birmingham and back home. A discharge planning phone conference will take place next week, at the earliest opportunity when everyone is back from Christmas and New Year leave. Feeding equipment, medicines and the components needed to make William's special 'MCT modular feed' need to be ordered and I need to be trained in making the feed, the 14 medications he will go home on and what to look out for and be concerned about when we are home. All this will take more than a couple of days but we are hoping to be home within a couple of weeks.

One issue that needs to be sorted first is the button gastrostomy in William's tummy. It is a special one with two ports that go into his stomach and just below into the bowel. He no longer needs the extra port but we were set to leave the tube in until it naturally needs changing. This time may have come sooner than planned. As his tummy is now not so distended as it was before transplant the tube doesn't seem to fit the hole in the stomach wall so well. It is fine during the day when he is upright but, in certain positions over night, the feed pours out through the gaps in the hole. His stoma is still swelling 3 time its size during the day and prolapses a bit. It all goes back to normal over night so we hope it will be fine. These are just gentle reminders of the exactly what his little body has been through. Although William is as well as possible and everyone is really pleased with him there remain just little bits and bobs to tweak.

Sunday, December 28, 2008

Christmas Magic

Ellie adding her prayer to the tree in the Chapel

A quiet moment watching the Christmas Charlie and Lola

Hope is really growing up

Enjoying opening a Postpal's Elf Box together on Christmas Eve

William's Christmas dinner - his first bolus feed leaving him free from being attached to medical equipment for the first time in his life

Special presents for two very special sisters

Tasty, not quite like you have at home but no washing up!

Christmas day in the morning, not all that unlike the scene would be at home

Ellie enjoying Christmas dinner

William having fun with his cracker

Christmas dinner is served

William's room resembling a toyshop

I am sorry the pictures are a bit jumbled up in order but I'm sure you can see what a fantastic Christmas we had. Ellie and Hope both said how strange they found it that their best Christmas ever was one spent in hospital. We were all together having fun and that means the world to us all now. This year, our minds were re-focused on the real meaning of Christmas and we all said that Christmas will never be quite the same again.
The girls and I woke at 6.30, delighted to see that Father Christmas had been. We picked up the stockings and went over to William, who was already awake and watching CBEEBIES. I was amazed that he hadn't already got stuck into his stocking, and the huge pile of extra presents Father Christmas had delivered to the children in hospital for Christmas. The children opened their stockings together and the day progressed much as Christmas day usually does. We were amazed at people's generosity in their presents to the children. I was really touched by a wonderful bunch of flowers that I received just before Christmas. Thank-you SO much. They have really brightened up my room in the parent's accomodation hotel and made it so much more homely for the girls and I over Christmas.
Christmas dinner was different, being eaten out of polysterene, but it was tasty and there was no washing up. William had his own Christmas dinner - his first bolus feed which he tolerated really well. Paul arrived in the afternoon and we opened the family presents. We then played together with toys and games before the girls and I left Paul to put William to bed and went back to the room for some festive TV and more games. Paul soon joined us as Wills was more than ready for bed and we relaxed with a drink or two and some nibbles. Although we are all looking forward to a home Christmas next year - it will be the first we have all had together at home for five years, we all agreed that this year was one of the most magical Christmasses we have ever had.
Our donor and family were in our thoughts and prayers. The girls and I discussed this, away from William but one incredible moment showed just how deep he can be for his age. I have talked to him about how his 'new tummy' was a special gift, like and early Christmas present. I didn't say any more about where it came from. Half way through the day, he toddled over and sat on my knee for a cuddle and said "What was the best Christmas present I got that Father Christmas didn't bring?" "I don't know", I answered, expecting him to be fishing for his Thomas and the Great Discovery play set with the new 'Stanley' engine that he was hoping we had got him (which we had but he hadn't been given it yet). His reply was very different
"It was my new tummy!" It wasn't just his best present - it was the best present for all of us.

Wednesday, December 24, 2008

Merry Christmas

So happy with Hope and Ellie joining in his speech and language games

Outside the hospital for the first time - the huge Christmas tree was the first thing that caught his eye
This is the happiest photo of all - it wouldn't be possible without our fantastic donor family. They are in our thoughts and prayers tonight

The tree on which are lights dedicated to my three wonderful children and the donor who has enabled us to look forward to 2009 with hope in our hearts


Tuesday, December 23, 2008

Life on the other side of the door

'Hello World!'

Sorry for the lack of blog for the last couple of days. Mum and Dad's Ruby Wedding was lovely. I have some lovely photos and will blog more on that when I have sorted them out. We are now in school holidays so I have no slots in the day where I can escape for a while. This means, all the last minute running around getting ready for Christmas have to be done while William is asleep. I spent all yesterday evening wrapping and have just got back from Tesco after realising that I have nothing to offer Hope and Ellie to eat on Christmas Day evening. I am now ready and have a moment to share all our exciting news.

The biggest news is that William is now allowed out of his room, as long as he is away from people. He is no longer on any IV medications or fluid and is only attached to his feeding pump through the day with an extra feeding pump replacing the water lost through his stoma during the day attached over night. Over the next week, he will be weaned off continuous feed and onto 'bolus feeds' where a larger volume is given over a short period of time in the day and continous feed over night. When we reach three of four large bolus feeds we will reach the first day of his life when he is not attached to a plastic tube that restricts his freedom to fully explore his world. His 24 hour oxygen tube merges seamlessly into his TPN that was attached to him between 20 and 24 hours a day. Within a week, William should be able to enjoy his days able to play and move about without the restrictions of a 3 foot line attached to a heavy bag and without being continually tangled up. The impact this will have on him will be beyond measure.

His psychological well being has been lifted enormously already, just by being able to move around his room attached only to the feed and by being allowed out to explore the Chapel. He is back to his old chatty self. Now he is no longer on lots of IV drugs he is able to spend long periods of time without the need for nurses to come in and fiddle with lines etc. He was getting really cross with them. I was really worried about his mood and behaviour at the weekend but can already see him getting his confidence and personality back.

He is working really well with the speech and language therapists and has regained his interest in smelling and playing with food. He will now put spoons in his mouth that 'taste of food' e.g. have been placed in a bag of skips or had some chocolate rubbed on (but no larger smears). We have been playing a fantastic game where you have to do different things with your mouth and tongue. This has been teaching him some of the movements needed in eating and helping him gain the confidence to try them out. He still struggles with the saliva and getting him to take the gel he is using to protect his mouth from thrush is a huge trauma but he is learning manage these and they no longer dominate his day.

Hope and Ellie will arrive in the morning. I am so looking forward to us all being together. In many ways, this will be one of the most special Christmasses we have ever had. I could get all reflective on this now but that is best left for another day.

Saturday, December 20, 2008

The Psychological Side to Transplant Recovery

Yesterday's blog centred on some of the technical aspects of transplantation. Jac, I'm sure you 'learned' stuff because I got some of it wrong but it is my understanding of some of the issues we have faced, rather than medical fact that you will find on here at the moment. I think I may well research some of this in more detail though as it is so fascinating. The only technical thing to report today is that William's liver enzymes are steadily coming down. This is a huge relief and, if the trend continues, he will not need a biopsy next week. This would be fantastic, given the trauma that any hint of an idea he gets that a 'special sleep' may be on the cards creates.

It is the psychological issues of transplant recovery that I have been thinking of a lot today. Wills has been through an enormous ordeal. We adults understand that this transplant was carried out because William needed it to remain alive. William has a mixed understanding. Linguistically, he is way beyond his years and quietly takes in a lot of what adults say around him. However, conceptual understanding is a whole other thing, meaning that he knows things but doesn't understand them. This is a pretty scary half way house to be in. He is constantly looking for reassurance as to what aspects of his current symptoms and treatment will be 'forever' and what is temporary. It is very hard for him to understand that the pain and discomfort he often feels is due to his digestive system getting used to feed and is actually a huge improvement on the flat and inactive gut he had before hand.

One of the intersesting signs that his new gut is functioning well is that he is salivating for England. I am seriously considering a trip to Mothercare for some of those muslin clothes that you never venture anywhere when you have a baby. The consultant on this week shared that he was told in medical school that the best way to judge when a baby is ready to be weaned is when they start to salivate as this is caused by the gut sending messages to the mouth to get ready for food. William used to salivate as a baby and always had trouble swallowing and spitting it. We used to use suction to clear it. As his old bowel became more and more dysfunctional he must have stopped producing as much. Over the last few days, his new bowel has begun to send these messages, indicating it is ready for food. This is a fantastic sign as to the health and function of the bowel but poor Wills has no idea what to do with all this extra fluid in his mouth. He has forgotton how to spit and swallow so just holds it in his mouth. He is confused and frightened by it and finds it difficult to speak. At times, he is becoming somewhat withdrawn as a result. We did briefly try a patch behind his ear to dry up the secretions a bit but we peeled it off sharpish as the consultant with overall responsibility for the small bowel transplant program explained that they haven't been passed as safe for use post transplant. We have to try and stimulate his swallow by touching round his mouth and stroking his throat.

His trauma is not helped by the fact he refuses point blank to open his mouth for nystatin or the gel we are now using in its place. This results in a battle and force from my side every time it is required. It is awful and makes me close to tears as I know that it is putting him off trying anything in his mouth. He was keen to try food but is now more aversive to it than ever before. He will get there but it is going to take a lot of work from the speech and language therapists, psychologists and ourselves. I think the main thing is to normalise food and tasting, make it fun and not make a thing of it. We have been playing with food and painting and sticking with it and playing funny face games. Wills is unable to move his tongue in all the positions needed to eat. There are no more pictures of this because we need to be natural, not pointing a camera in his face when he is engaging with food in any way. We have to encourage licking and dipping - what an excuse for some yummy chocolate foundue's when we get home! I think the important thing will be to sit down as a family and eat and include William at the table. We will actually have the time to do this now I won't be doing TPN every evening.

It is hard and worrying to see Wills so shy, withdrawn and, at times, traumatised but he was similar after his illeostomy this time last year and I know he will get his confidence back in time. He has been through a huge amount, not just with the transplant, but will all the infections and line changes and virtually living in hospital for the last 12 months. Right now he needs lots of love, encouragement, security, praise and, above all, time to process and come to terms with it all in his own way. It is pretty full time and tiring to provide all this for him. I am off for the day tomorrow for a lunch to mark Mum and Dad's Ruby Wedding. It will be lovely to see them and Hope and Ellie and to relax and have a lovely meal - my Christmas dinner as well! I think it will be a break I really need to re-charge my batteries.

Friday, December 19, 2008

Baffled by the science

William is doing really well. He is back on full feed (volume at least, we still need to add more calorie concentration) and the plan for the next few days is to swap the IV fluid given to replace his stoma losses with sterile water into his gastrostomy. He is being weaned off all the IV antibiotics. The critical dugs that are being given IV are his steroids, anti-rejection medication and an anti-viral drug he is on because his donor had been exposed to a common virus (such as the one causing glandular fever) that he has not been exposed to and has no natural immunity. These will be switched to oral when the team are confident that they will be absorbed OK. The anti-viral drug represents one of the many advances in transplants that William is benefitting from. That is improved surveilance. William was tested for exposure to common viruses during his assessment. The donor is also tested and any viruses they had been exposed to that the recipient hasn't are treated after transplant to prevent them being transmitted. This kind of surveilance remains critical for the rest of William's life as future exposure to viruses, such as glandular fever can be very dangerous for someone who is immunosupressed. Catching them early enables them to be treated more effectively. Advances in the ability to test for exposure to viruses have been a huge boost in post-transplant survival.

William's liver is still behaving mysteriously. I confessed my googling to the team and it turns out that donor-versus-host disease is something that is on their minds, although they think it highly unlikely. He has had a blood test to explore the possibility. This is another amazing test. The amount of donor lymphocytes (one od the white blood cells involved in the immune system) that are mixed in the recipient blood are measured as a precentage. William's result was normal, with 1% of his lymphocytes coming from his donor. This makes donor-versus-host disease even more unlikely but doesn't rule it out completely. Only a liver biopsy can do that and he will have one on Mondy if his liver hasn't settled. This will be more to rule things out so we can all move on less concerned as William is so well in himself and has no other symptoms of anything too worrying. These kinds of uncertainties are stressful though and are sufficient to remind us all of the importance of remembering just what a huge thing a transplant is to the rest of the body and how you can never assume you are in the clear. You never know what is around the corner. William's body will be forever be balanced beween sufficient anti-rejection medication and steroids to prevent his body rejecting his new bowel and the donor immune system that it contains from attacking him and the dangers of infection caused as these drugs supress the rest of his immune system in the same way. We will all have to learn to keep a healthy balance that enables us to relax and enjoy our new life together whilst maintaining the vigilance that is our part in the partnership between transplant recipients, their surgical and medical team and the advances in medical science. The more I learn about it all the more baffled yet fascinated I am.

Wednesday, December 17, 2008

'Keeping us on our toes'

I can't wait for the day when doctors stop having to use phrases such as 'he is keeping us on our toes' about William. Today has been another confusing day. We have made some progress. William's feed is up 5mls to 30 mls per hour with a plan to increase every 5mls per day until we are back to 50. He will probably go back onto a little TPN while we are increasing, just to keep his nutrition up. The team were wondering about going back on TPN because we thought his abnormal or 'deranged' as they call them here, liver enzyme levels were TPN related. The first day he was off TPN, the came down and reassured us all that it was TPN and his liver function tests would soon be back to normal. However, his enzyme levels are now higher than ever, up in the 1000s so TPN is clearly not the culprit. It is a cause for concern so Wills is having a liver biopsy on Friday to find out what is going on and what, if any, treatment is needed. He is going to be most upset about that as it will involve another 'special sleep'.

Naturally, and stupidly, I have 'googled' to research what could cause this problem with William's liver. The main potential culprit seemed to be 'donor (or graft) versus host disease' where the donated organ's own immune system attacks that of the recipient. The symptoms include raised liver enzymes and bilirubin but also a skin rash, which William doesn't have. This can be a very dangerous complication so I had to ask if there was a chance this is what William has. As he is well in himself and has no fever or rash, it is unlikely, but it is something that has to be ruled out and the biopsy will do this. It could also be an infection or virus. If it does turn out to be donor-versus-host-disease, we should be able to get it under control. This is graded, as is rejection, with grade 1 being minor, up to grade 4 which is severe and usually fatal. If William has it, it is likely to be a low grade and one of the biggest break throughs in transplant care is impoved surveilance. So many complications can be caught early by excellent teams with years of experience in interpreting results. I am reassured by this but will still sleep more easily when William's liver numbers are on a consistent downward trend.

The speech and language therapist came to see William today and is another person who would agree he is keeping us on our toes. She explained that swallowing saliva in normal amounts in automatic but swallowing food and drink, or larger amounts of saliva is conscious and requres several steps. First we chew, then we gather it all together to swallow. Automatic swallowing doesn't require this step of gathering it all together and it is likely that this is what William will need to re-learn to be able to eat and drink. He is unable to spit for the same reason. He can't get things together in his mouth to do it. She is going to talk to a colleague and come back tomorrow to see what we can try. Poor Wills. He is so keen to try things but gets stuck and then the saliva he generates causes its own problems. He just sits there with his mouth shut unable to talk and gets quite upset. It is difficult to get the balance between stimulating him and letting him explore things like his strawberry yogurts and him being so traumatised by the result that it puts him off trying again. This is going to take a very long time and involve a lot of work and encouragement.

This may all seem like a lot of stress. Katie summed it all up so well in a comment yesterday. We do seem to have begun a frustrating and often worrying game of snakes and ladders but the transplant gave us the chance to get onto the board with a chance of reaching the square with the word 'recovered'. I was going to put the final square but I know there will be more snakes and ladders to come after William's initial recovery. The game board stretches for the rest of his life but at least he has a game to play.

Tuesday, December 16, 2008

First Tastes

No encouragement needed to get stuck in as soon as the green light was given

It tastes nice but then what am I supposed to do with it?

Not too keen on 'Quavers'!
William was given the go ahead to take his first tastes. He has been really looking forward to strawberry yogurt and was not dissapointed when a 'Thomas' fromage frais was put in front of him. He needed no encouragement and got stuck straight in, shovelling it in by the spoonful. We soon realised that he wasn't swallowing. When his mouth was full, he sat looking totally bemused. We had to scoop it all out again. The same thing happened when he finally got to bite into one of his advent calender chocolates. It seems William has forgotton how to swallow and is also unable to spit things out. How on earth do you teach someone to do these things? They seem so instinctive. He has ben referred to the speech and language team for an assessment. It will take him some time to re-learn the skills he needs to eat and drink.
Wills is allowed his yogurt, tiny pieces of chocolate and 'melt in the mouth foods', such as prawn crackers, quavers, wotzits etc. We tried quavers for lunch today. Once again, he was keen to get one into his mouth and, as you can see, he was totally unimpressed when it was in! He doesn't like them at all. I was trying to encourage him to have some meringue as I thought it would taste nice and disolve nicely but he was having none of it. There is no pressure. We have bits and bobs in the room that he is allowed to try and he can have them when he feels like it. We found a lovely Thomas sports drinking bottle which he managed to sip from. He didn't swallow it though. Thankfully, I have persuaded him wear bibs, despite his initial reaction that they wer for babies!
We climbed quite a ladder between Sunday's blog entry and today's. William's feed was increased by 5mls every 8 hours and on Monday we reached the fantastic milestone of being on full feed (volume but not ful calorie density) and TPN was switched off!! If I had been able to blog yesterday it would have been the most excited entry since the call. His stoma output increased by nearly a litre yesterday so, today, he is back on half feed. Exactly where we were when I last blogged. We climbed the ladder but then hit the snake that took us back again. I was reassured by the lovely consultant who heads the transplant programme that this is normal. He had tried to push Wills a bit to get him off TPN as his liver was getting cross about being back on. It was a bit quick for him so we went back a bit. His liver has improved since being off TPN so he will stay on half feed and half IV fluid. He may restart TPN, temporarily, if we go square by square for a while and take a few days to be back to full feeds. He started some medicine (good old immodium) to slow his gut down and, so far, it looks to have worked as his output has slowed significantly. This is really encouraging as we tried this and other meds in his old bowel and they made no difference at all. He is going to get there in his own time.

Sunday, December 14, 2008

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.

Saturday, December 13, 2008

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.

Friday, December 12, 2008

Square by Square

"What do crocodiles eat?"


"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.

Thursday, December 11, 2008

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.

Wednesday, December 10, 2008

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.

Tuesday, December 09, 2008

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.

Monday, December 08, 2008

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.

Sunday, December 07, 2008

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.

Saturday, December 06, 2008

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.

Friday, December 05, 2008

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.

Thursday, December 04, 2008

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.

Wednesday, December 03, 2008


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.

Tuesday, December 02, 2008

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.

Monday, December 01, 2008

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.