Saturday, January 31, 2009

Time Out

Following my meeting with the consultant on Wednesday, I have been sitting back and letting staff do William's meds and blood sugars etc. I am actually quite enjoying it and it does allow more time for cutting, sticking, painting and making pasta robots... (from the Mr Maker CBeebies web page). One of the key reasons he was keen for me to do this is to learn to trust the staff to...leave William for a while! This I have now done on a couple of occasions.

On Thursday (I think, days and dates run into each other a bit in here!) I left him to meet 'LB' and 'V' from 'Fetch'. I had a lovely meal that didn't come out of a plastic microwave packet and relaxed enjoying conversation that wasn't all about hospital life. It was so nice to talk to other adults and be in a family situation and away from the intensity of life on the ward.

Yesterday, I took an even deeper breath and left William overnight, returning this afternoon. The reason of course, to go and see the girls and Mum and Dad. I haven't seen Dad for ages and ages, haven't spent any real quality time with Mum and have not seen my other children since Christmas. It was hard leaving Wills but the looks on their faces made it totally worth while. We had a lovely time together and I enjoyed more home cooked food, especially today's brunch (yum yum). Mum and Dad have done a sterling job in looking after and parenting Hope and Ellie over the last couple of years when Wills has been in hospital, often for several months at a time. They are very relaxed and happy there but I do miss them so much. It was hard leaving Wills alone at the hospital but I needed to be with the girls for a while and chose a morning when I knew he was being looked after with a nurse he knows well and likes. She was looking forward to some fun with him but he has not been quite himself today. I hope he isn't brewing up anything else as he was coughing and wretching quite a lot. We are certainly not having the hardest but are not having the easiest time with William's transplant recovery. His stoma output is still high, despite increases in medication. Hopefully, it will settle tomorrow after the new regime kicks in a bit more. If so, I am guessing we will be home sometime next week. If not, it will be back to the drawing board.

I have recognised the need for more time off the ward and am now sleeping in the hotel, rather than chilling there a while and returning to sleep on the ward. It is good to leave it all behind for a while at the end of the day and I can be back in 5 minutes if William needed me.

Thursday, January 29, 2009

Update before a break

Quick update today as I am off for a night away from the hospital this evening with the lovely 'LB' and 'V' from Fetch.

William's stoma poured yesterday and this morning so he ended up back on IV fluids this morning. He will start on another drug today to try and slow it down. His blood sugars are settling but the diabetic team came to review him today and increased his insulin by a unit (while I was out buying him a baby doll to stop him playing with the rather mucky one he found in the corridor and adopted!).

William is bored and fed up as he is very well in himself. I have a room in the hotel from tonight though. My name had not been added on the list so it took a while to get. William sleeps till 8 at the moment and, with the nurses doing his morning meds, I am looking forward to enjoying the treat of sleeping at the hotel and having some 'me time' before we get home. I am hoping that will not be too much longer so we can all be together again. Mum and Dad have done a sterling job in taking care of the girls with their winter viruses and emotional ups and downs through the last few months but I do miss them and wish I was with them through all of this myself. You do miss so much of the siblings' years that can't be re-created when all has calmed down for the 'sick' child.

Wednesday, January 28, 2009

When you take that away I am....a Mummy!

It doesn't look like we will be home this week. William'sblood sugars are settling nicely and he is such a star taking his insulin - he sat there really still for me this morning. He is getting involved in his blood sugar testing and scoops the blood up onto the test strip before watching for the numbers. His stoma output has not been so settled today, indicating that some more tweaking of medication is required.

I was called to meet with our consultant today. He oversees all the small bowel transplant children and meets with parents to keep us up to date. These meetings are often a lot more than just medical discussion. Having a transplant is a life saving but also a life altering event. The commitment is for life and the relationship that begins with the transplant team on the pre-assessment visit is also for life. Our consultant is as interested in sorting out any concerns, no matter how small, that may impact these commitments and relationships as soon as they arise. Everything seems to get back to him - he is all knowing and very perceptive! I have been looking stressed apparently. I have been stressed, I think anyone reading this blog would have picked this up. I have been disorientated from being home briefly, back in our Chelsea Pad and then back here. Coming back here unlocked a whole heap of emotions and it has been hard being away from Hope and Ellie when they have had some growing up issues and some nasty bugs themselve to deal with. The biggest thing has been that Paul is busy working at the moment so, apart from a quick dash for a sandwich or answering a few work emails when the teacher is working with William, I have not had any breaks from being with Wills over the last couple of weeks. I didn't think I particulary looked stressed though but, as I said, people are perceptive!

One of the things I find hard from being between the two hospitals is that I do everything for William, all his cares, meds, TPN in the past and, in our local hospital (not the Chelsea Pad) I usually end up doing most of the IV antibiotics too. Here is very different. All tests, such as blood sugar monitoring and urine testing is done by the nurses. When we came in, I was doing all the medicines but the nurses preferred to do them on some shifts. I find it really hard to sit back and have someone else do these things as they have become part of my parenting of William. It is like someone saying that they will dress him and change his nappies today. Today, the consultant asked me to let them do all the medicines as well and just view it as a break. I said it can feel like you are not trusted when you do them all at home and other hospitals, and had been doing them here initially but was assured it is not that or we would never have been allowed to take him home. When parents look tired and stressed, the team like them to take a break and hand the care over so they are refreshed when they get home and have to do it all. I have already enjoyed the fact the special feed is made for us here. Why should I view the meds any differently? I still physically give them to him but they arrive on a tray all drawn up for me! I was forced to consider that feeling that they are taking something away that is central to what I do for William, central to my role in life. When you take that away, what am I? A Mummy of course! I am not a nurse, although it feels that way a lot of the time. I am a Mummy and a break from the meds means a rest to do some of the things I want to do, like reading and writing but it also means more time to play games, colour in, kick balloons around the floor, blow a Mummy! It also helps to build the confidence in a team who will be closely involved in William's care I hope until he reaches the time to transfer into adult care. I can't be with him all the time. He has two sisters who also need me, I have a job to do and there are some coffee shops and an art gallery here in Birmingham that I would like to spend some time in during our visits here. I felt a range of emotions about this today but ended up with a feeling of relief that almost had me in tears in front of the consultant and the nurse who was with us. It is time for William to begin to learn that he can't have Mummy every second of every day when he is in hospital and there will be times, when he is well enough, when he will be left for a while with nurses he knows and trusts while I spend time with Hope and Ellie, go to a work meeting or just take a break to do something away from the hospital.

Here's to tomorrow morning when I get to enjoy a leisurely cup of tea with a book and radio 4 while the nurse draws up the morning set of ten medications!

Tuesday, January 27, 2009

Things are settling

William is doing very well up in Birmingham. For some reason, his new bowel is moving a fair bit faster now than it was in the first few weeks after his transplant. This could be due to whatever bug or virus caused his pneumonia or any number of reasons I guess. We have been increasing the medication to slow it down and it looks like it has worked, fingers crossed!

Despite his bowel having been a little bit naughty, it has been absorbing enough glucose to send William's blood sugars up a bit too high. After two weeks of waiting for them to settle, we finally started on a tiny dose of slow release insulin this morning. It seems to have worked. His sugars were similar to yesterday all day but the last one an hour or so ago was 5 - spot on! We just need to wait a day or two while the insulin settles down with his own system as he is still producing insulin and just needs a little helping hand. It is rather tricky to inject insulin into a wriggling and protesing child. I wimped out today, opting to hold him on my knee while the diabetes nurse injected him. I will try again tomorrow and am planning to work his injection time to early morning so I can give it before he wakes up.

Once we are sure the insulin dose is OK, that his stoma output has settled and his tacrilimus (anti-rejection drug) levels are stable we will be able to go home. This could be the end of the week or start of next. William is as well as he has ever been and desperate to get home. He is playful and chatty to the staff and they are finally seeing the William we all know and love. He is being a bit too playful and has only just fallen asleep (it is 11 pm)! It was so lovely to see at first that I was a bit slack in clamping down on bed time. I have nowhere to go in the evening either so am here, preventing him from sleeping so I am sure he will settle back at home and in his own roo,.

I am at least as desperate as he is to be back in my own home and in control of life again and the girls are getting to the stage when they really do need to be back with their Mum and their friends. I am so looking forward to being able to be Mum to all my children. It is so hard having to try and sort out their growing pains and sooth away colds and upsets over the phone! I am hoping that we will be settling down as a family again by Saturday week. I have lovely visions of Wills in bed and enjoying a take away and a teeny chick flick with Hope and Ellie, in our PJs and enjoying some much needed girly bonding!

Saturday, January 24, 2009

The end of today and the beginning of tomorrow

I didn't get that restorative sleep last night so I am blogging early before curling up with a book and trying again tonight. William woke a couple of times in the night, sore after his endoscopy. We both got to sleep again but were woken at five as his feeding tube had come unattached and several hours of feed, together with the contents of his stomach were in puddles all over and under the bed. Wills is now in a deep and calm sleep so I am hoping for a better night tonight.

I am still very relieved that Wills hasn't any rejection but today has not been a good day for him. He has been struggling with thick, slimy saliva in his mouth all day and just won't swallow it. Needless to say, he has been very quiet! He has been out of sorts too. Not surprising really, as his blood sugars have been in the 20s at times, I would feel pretty lousy if mine were so high. An explanation for this hike came with today's tac (tacrilimus, an anti rejection drug) levels. William's are high enough to be toxic and, as this this drug is the likely culprit for the increase in his blood sugar levels, this could explain a lot about how he has been feeling and behaving today. I googled (naughty girl!) tacrilimus and blood sugars and have found that one study showed that 20% of kidney transplant patients needed insulin due to 'tacrilimus induced diabetes' and that the mean onset for this was 68 days post transplant. William's transplant was just over 2 months ago so I think there is a strong chance this is what he has, especially as me being type 1 diabetic puts him even more at risk. The team here are still watching and waiting and hoping I guess that it has been due to him being unwell and now the high tac levels but the pattern has been consistent with sugar levels steadily increasing (apart from today's jump) for the last two weeks, despite his recovery from the pneumonia and a week of tac levels that were too low to be of any clinical use. I just want to get things sorted so he can be made to feel better and we can all go home. The good news is that William's stoma outut appears to be settling a bit (although he does tend to pour a bit overnight at the moment so I hope I haven't spoken too soon).

I managed to escape for half an hour today to get Wills a Thomas DVD that I couldn't actually find - bring back Woolies - they were lined up in there!! I did buy a few bits and bobs to keep him occupied. Magic paper, crayons and paint are a real favourite at the moment. If you have children then I strongly recommend them. The paint and pens only work on the 'magic paper'. William was given a magic painting set just before Christmas and it is one thing he will pick up however he is feeling so I bought in reinforcements. I also bought in reinforcements for me in the shape of two more Jodie Picoult books (the author of 'My Sister's Keeper, something I gloriously managed not to mention yesterday). Her new book 'A Change of Heart' was half price and is about organ donation and transplant so that will be interesting. I also picked up Cecelia Ahern's 'Thanks for the Memories' as this is about received memories following a blood transfusion. The idea of taking on some aspect of a donor's memory is interesting. William has a total obsession for strawberry flavoured food, something he never displayed before his transplant. We thought it would be biscuits that he wanted as these were his obsession for 'smelling' but, no, strawberry yogurt is the real thing and the only thing he has dared to put in his mouth and actually swallow so far. I will be interested to see how this is treated in the book as it is something I would like to explore in a piece of fiction at some time.

Talking of my writing. This blog has been too busy since we came home for those two short days to have given me the space to celebrate my personal bit of news. Among the post that welcomed me home were two cheques for accepted short pieces and fillers I had submitted and a complimentary magazine containing a feature I sent in 'unsolicited' some months ago. The article is in this months 'Woman Alive', a Christian magazine that can be found in Christian bookshops and online. I am now well and truely a paid up, professional, published writer. Now I need to keep up the momentum, along side that I am slowly managing to regain in my main job. One of the key things that struck home in 'My Sisters Keeper' is the way the mother had totally lost all touch of what and who she was before she became Mum to a sick child. I will come back to this in a later blog but it has given me a wake up call to re-form and strengthen links with the woman I used to be and, where this is no longer possible, look for new avenues to be she that I want to be, she who exists outside the constraints I have found myself in. Of course, there are many other messages in the book about the impact on siblings and relationships etc and I will come back to that. I can't do much about those until we all get home but finding 'me' again has been a recurrent theme in this blog of late and something I can begin to work on right here and right now!

Friday, January 23, 2009

Big Sigh of Relief!

William had his endoscope and biopsies today and all looks good - NO REJECTION!! I am hugely relieved. We have to get on top of his high stoma outut and the blood sugars but these are just a matter of tweaking. It looks like we will stay in Birmingham for a few more days at least to sort these things out. I will blog more tomorrow as I am about to get the best nights sleep in ages now we know all is well.

I would have blogged more earlier in the evening but have been stuck in one of those books you just can't put down until you have finished it. Have you read 'My Sister's Keeper'. If not, beg, borrow or buy a copy, especially if you are Mum to a child like William. You will see yourself and your family on every page and it will be a huge eye opener. I will blog more about this tomorrow as well but, if you stumble across a copy in the mean time I strongly recommend you pick it up.

Wednesday, January 21, 2009

Back up the M6!

We are going back to Birmingham tomorrow (as long as there is a bed!). William has been consistently showing signs of rejection since Friday and so it is time to get some biopsies and see what is going on. This is another worrying time but very much something to expect from time to time, especially with bowel transplants as they seem to carry higher risks of rejection. We have to wait until Friday for the biopsies and should have some results by the end of the day so it will be another tense couple of days.

We will be closely monitoring William's blood sugar while he is away as his levels have been on the high side. At the moment, he has 'glucose tolerance impairment' - not 'yet' diabetes but it looks like he will need to be started on some insulin injections. This may be a transient thing or may be the beginning of diabetes bought on by his anti-rejection medication. He is being such a good and brave boy while we prick him to test his blood six times a day and every four hours over night. We were due to start insulin tomorrow but, given that we will then be in the back of an ambulance on the M6, we all agreed it is not the most sensible timing! His sugars are not dangerously high so a few days longer will be OK. They will either sort it in Birmingham or we will be back here in Chelsea after sorting out his bowel up there. We still have a bit of a way to go before we are back home with the girls again. Wills is great in himself though - the best he has been in a long time.

Sunday, January 18, 2009

The Last Week

It has been quite a week and I am feeling totally drained and exhausted. It is now 10pm and William is sleeping soundly and peacefully - that is a fantastic first in recent days and I am hoping to be able to follow him into some restorative dreaming very soon.

Well, my little fighter has done it again - he managed to get to the point where a trip to intensive care was being seriously considered and bounce right back up again. To the huge relief of all of us and all the doctors and nurses here, he is now off oxygen and back to his happy self (most of the time, he is growing more cross with anyone approaching him with a needle or to put painful drugs into his cannula but, after all he has been through, who can blame him!). He now has no central line - a great step forward in general but he still has difficult venous access and it has taken about 12 cannulas to get him better. His poor arms are black and blue, which must be due to the steroids and the drug given to keep his blood nice and thin to avoid clots in the vessels forming between his own 'native' bowel and his 'graft' or donated bowel. We are all heaving a huge sigh of relief but it has left me scarred and nervous when I consider what could have been and how quickly he became so ill, despite all the isolation and protection. It serves to show how vulnerable life post transplant can be and I am looking forward to enjoying life at home with my children so as to make the very best of every minute we have been given back together when William received the gift of his new bowel.

We may have to wait a little bit longer for that to come. I woke early (having been woken up by William's wordless protests at having his IV antibiotics given) on Friday morning to see William's stoma bag full to burst. There was about three times as much as usual for the night so I tested it to see if there was any sugar in the fluid. A little bit, although not ideal, is acceptable at this stage post transplant but more than 2% can indicate rejection as the bowel is no longer absorbing as effectively as it should. A rejecting organ will begin to fail and this is the first sign. The test involves mixing measured drops of the stoma stool fluid with water and dropping in a tablet. This fizzes about and then settles into a colour - blue being negative, bright orange indicating over 2% sugar with a scale of bottle green to orangey browns in between. So far, we had seen blue and the occasional shade of green. That morning, I watched in horror as it turned bright orange! I was conviced William was in rejection. Our shared care protocol sets out clearly what to do so the doctor was paged and a series of phone calls made to consulants here and in Birmingham. I do apologise for them being woken at 5.30am - if Wills hadn't woken me this would not have happened until 8.00! I was so frustrated that no-one was immediately ready with the strong IV steroid needed to hault any possible rejection. Phone calls continued during the day, our gastro SHO was a total star! The message from Birmingham was that they didn't think we needed to assume rejection at this stage and to watch and wait. I was so upset, worried and frustrated at this as I know how quickly damage could be done. I couldn't understand why we weren't acting when William had high stoma output and over 2% sugar - this was exactly what we were told to assume as rejection! I kept thinking why risk William's new bowel. I felt even more worried when we discovered that the level of William's anti-rejection drug in his blood had been way too low for the past few days.

Saturday was a similar day but our lovely consultant was on duty in Birmingham and called the team here himself. The nurses were most impressed with him as it was them he wanted to speak to to ask how they felt William was in himself as this is the key indicator as to why they were not instantly assuming rejction. He called back later to talk to me and, although I am still concerned, he did put my mind at rest as to why they are taking the actions they are doing. On balance, it is not sensible to give William a big dose of steroids to dampen down in immune system even further than it is while he is recovering from such a nasty bout of pneumonia. In this kind of situation, he would be bought to Birmingham for an endoscopy and biopsies from his bowel. This would involve a 'special sleep' and this is also not ideal when his lungs have taken such a battering. Given that he is well in himself and has no fever, it is most likely the sugar and increased output is due to him having been so unwell and, on balance, it is best to watch and wait. He did share my concerns that this could lead to some damage if it is rejection. It is one of those tricky balances of pros and cons. If things don't settle with an increase in the drugs William takes to slow his gut down to enable maximum time for absorption, we will go up to Birmingham in the next few days to further explore what is going on. I did feel much better after my chat on the phone but I am still concerned about rejection, although less so. I will be relieved when the tablet turns blue again.

Sugar is a bit of a theme at the moment as William's blood sugars have been high at times after his bolus feeds during the day. His anti-rejection medicine can cause diabetes so that is a concern. He is now being monitored by the relevant specialists - probably the only team here who haven't yet been involved with him so I reckon he just wanted the chance to say hello! He may need a little bit of insulin but I think the plan is to first tweak his feed regime to fewer, smaller bolus feeds and change the recipie to reduce the amount of sugar in it. It may be that he is also getting rid of unwanted sugar in his stoma stool, after all, he must be absorbing enough to enable his blood sugar levels to increase like that.

So, William is over his nasty chest and we are over a big scare but there are a few things now that need exploring and tweaking. We may be transferred back to Birmingham or may stay here with the local team acting on the transplant team's advice. Either way, we all need a bit more of that patience, especially the girls who were so looking forward to coming home. I miss them so much. I hope we can sort things things out quickly and get home together but I want to make sure he is really well and won't bounce back in this time.

Now, for that rest and early (ish now) night!

Wednesday, January 14, 2009

Not the best start to life post transplant!

This is not the start to our post-transplant lives we had hoped for! William has pneumonia in both lungs and has been really quite poorly. We thought for a while he may have needed support from some form of mechanical ventilation but, so far, he has held his own with the help of a fair whack of oxygen. Things are settling now and we are keeping everything crossed that he doesn't get any secondary infection or rejection.

Rejection is a big risk as the immune response he mounted to fight the infection is exactly what we are trying to suppress. There is a real threat that he could attack his new bowel as a 'side effect' from attacking his infection. One sign of this is to find sugar in his stoma fluid, as a result of the bowel not working and absorbing so effectively. William usually has no sugar or 1/4 percent. He is up to 1 percent today and 2 percent is indicative of rejection. I am hoping this is due to him being unwell rather than the start of rejection. Most small bowel transplant recipients experience some level of rejection in the first couple of years and I am confident we will get on top of any such opportunistic rejection if it does occur. What concerns me more is the fact he has some fluid in his abdominal cavity (ascites), something he has not had before. The team here feel it is secondary to the pneumonia and the fact he had poor renal function when he first got to the hospital. This has settled in his blood tests now but he was really thirsty and dehydrated in his bloods yet overloaded in terms of his fluid intake and has put on 2kgs of weight in 2 days (from 15-17 kg) This fluid had to go somewhere and can end up in places such as the abdominal cavity. This is very painful for him, as is the pneumonia, so the poor thing is in a bit of a state. He so deserves some happy and healthy times to enjoy his new tummy. I hope they are just around the corner and will be here to stay for a while.

Monday, January 12, 2009


We are no longer home! We are back in our 'Chelsea Pad' as William has 'sepsis', an infection and is pretty poorly. We don't yet know what it is. He hasn't been right since we were home. I will blog more later about the last few days. Right now I am exhausted, concerned and disapointed to be back. It is somewhat disorientating to be back here so soon.

Thursday, January 08, 2009

We are home!!!

I am excited, happy and terrified. We are home :-) Birmingham seems a long way away which is nice and scary. The house is chaos with a little organised area for making the feed and doing meds. We have been told to expect a few emergency admissions in the first year and have to go back for a routine admission in about 3 weeks time, but for now - we are home!

I had a lovely parcel of Nespresso coffee pods waiting for me. I don't know who sent them but am guessing it is because I mentioned them here. Whoever it was - thank-you so much. They will be (are being!) very much enjoyed. Thanks loads to to Paul's lovely Mum for cleaning, sorting and filling the fridge. I knew it was you as Paul would never have thought to make sure there is soya milk so I could have a cup of tea when I walked in. The cake is lovely.

Tuesday, January 06, 2009

We are going home...

...on Thursday. I am so happy and also excited and just a teeny tiny bit nervous. I can't wait to have us all back as a family again. The discharge meeting was daunting. Everyone this end was sitting round a small table with a triangular microphone in the middle. The Chelsea and Westminter and local Croydon teams joined in on conference calls. At the start, our consultant here said he had no date in mind. Then, out of the blue and to the surprise of his colleagues as much as everyone else, he announced we were going home on Thursday!! We will be seen once a week, alternating between Birmingham and Chelsea initially so we will be back here next week. In three weeks time, he will be back in for an overnight stay for endoscopy and biopsies and this will be repeated every 3 months. This means 'special sleep' every 3 months which will not be at all appreciated by Wills! We have been told to expect emergency admissions as the first two years post transplant are vulnerable ones and problems can and do arise. We are going home though and we can take everything else in our stride. The only slight concern is that William's stoma is getting increasingly swollen and prolapsed. It is OK for now and we hope it will stay the same before pulling back in as he grows. If it gets much worse he may need another operation to re-fashion it. I am hoping this will not become necessary!

I am feeling very reflective about all that we have been through. It has been a tremendous journey and our arrival here seems an eternity ago. I want to remember everything about it and will be writing copious notes to record every detail over the next few weeks and months. I'm sure some of my musings will be shared on here. In the meantime, I am thinking about home and the things I have missed the most and am most looking forward to:

1. Is, of course, being with Hope and Ellie!!

(others, in no particular order)
  • having friends round
  • cooking
  • singing along to my i-tunes playlists outloud
  • space
  • wearing different clothes to the ones I have lived in for the last 3 months
  • my nespresso cofee machine
  • freedom, being able to go into the kitchen without waiting to be let back in again
  • being able to be spontaneous and do something else other than the books and things I have with me

I really miss being able to go to Church, go shopping and generally get out and about but they will all have to be worked around Wills for the next four months as he is unable to mix socially until six months after his transplant. I will have to be inventive and think of lots of ways to entertain (healthy) visitors at home so do let me know if you are planning to be in the Croydon area any time in the next few months.

Monday, January 05, 2009

More Than Just a New Year

I have talked a lot on here about our very special Christmas. New Year was another amazing experience for me this year. Having spent three of the last four Christmasses in hospital, we have also seen three New Year's in during a long term hospital stay. Many people have spent a New Year celebration with the feeling that everyone else is having a party that they were not really invited to. New Year in hospital can really exacerbate that kind of emotion.

My first hospital New Year was during William's initial long stay when he first went onto TPN and we began to learn of the extent of his medical condition, including he fact that he would, ultimately, face the need of a transplant to stay alive. Paul was off to a party with some old friends and singers. I went along too. It was a great party but one of the worst evenings of my life. I had lost all the skills I needed to mix with this group of confident and charismatic strangers. I lurked in the corner, watching Paul and all his mates share fun and enjoyment that came so easily to them but that I seemed unable to raise within myself. Paul and I had a massive row on the way back and I ended up on a bus alone. One of the party games had been to ask questions to guess each other's favourite book, film etc. I had the feeling that I was just tagging on with Paul and no-one was really interested in mine. I was telling this to the nurses when I got back and one asked me what my favourite film was. This resulted in an animated discussion of films, books and actors. I remember how sad it made me feel that I had become more socially comfortable sitting at a nurses station on a children's ward than in a house party. I have never been that good in a room of strangers but would have usually managed a lot better than I had. I will never forget the emotions I experienced that night.

Last year, Paul and I tried to have a special New Year. Once again, William was pretty unwell and we were waiting for his illeostomy operation that would happen when the full surgical and gastro teams were reassembled after the Christmas and New Year break. We did OK, having a meal together and then walking down to watch the fireworks over the Thames. We were going through the motions a bit though and neither of us could say it was the best New Year, especially as we were worried about William at the time.

This year looked set to be another disaster. I didn't want to be alone and Paul didn't really fancy travelling up when neither of us had any plans of what we would do here. We would likely have ended up wandering aimlessly, once again watching everyone else have fun. My lovely Christmas Fairy, Aunty P, gave me a Parish Mag for her church. She had told me about this wonderful 'Candlelight Church' that takes place each week and I really wanted to go and experience it. Unfortunately, the timing would make it just a bit too early to have settled William and travelled there. Looking throught he mag, I saw there was to be a special Candlelight Church on New Year's Eve. I felt that this was the perfect way for me to see out this amazing year and look to the future. The reflective and religous mood would be just right for me and I felt I really had to be there. Paul was pleased as it gave him a free pink pass to spend his idea of a perfect New Year with his mates. I did get a bit sad that we were to be apart during the days leading up to it and did ask him to come here afterall, which went down like a ton of bricks! If he had of come, I wouldn't have experienced one of the most amazing New Year's ever.

I had met the girl who organised the evening when she came to visit me with Aunty P. Her husband very kindly picked me up. It was a misty and icy evening and I suddenly felt really vulnerable waiting outside the hospital. It has been such a long time, many years since I last went to a social event with strangers, probably that New Year's eve in 2005. I worried about being so far away from William, what if we crashed on ice or into a drunk driver.... I felt better as soon as I was on my way. The church was beautiful. Inside were Christmas trees on each window ledge, a large one at the front and candles everywhere. It was magic. I was given a coffee and asked if I would read in the Taize service that was to proceed the communion service to see in 2009. My reading from Isiah 43 could not have been more perfect. "Forget former things; do not dwell on the past. See, I am doing a new thing!" It is easy for those non-religious people reading this to say that, of course a New Year church service would focus on hope for the future and all things new but I was very aware of God talking to me, reassuring me and reaffirming that He wants me to look for how I should be using the experiences I have journeyed through in the coming year and those that follow. I felt an incredible sense hope, peace and calm.

Just as well I felt calm really as the next thing I was asked to do was sing...solo! I haven't sung alone in public for a very long time. I had 5 minutes to think of what to sing during the peace in the communion service to follow. There was no time to find something I could be accompanied in so I chose the Taize chant that says 'My peace I bring you, my peace I leave you. Trouble not your heart, be not afraid.' William's transplant has saved his life and our family. It has given us a future. However, with that will come enormous challenges and change. Our family has been fragmented for the last three years. We are about to come back together again which is fantastic and I just can't wait. All large change, even positive, brings stress and uncertainty. I also have to find my way in the world again. I have lost a lot of who and what I was before. I was thrown in the deep end on New Year's Eve, reading and singing in a group of brand new people. I don't believe that was an accident. That filled me with confidence for the coming year. Our family will learn to be together again. We will have our moments but we will get there. I will find my feet and build my own life again. I have talents and gifts that have been put away in storage and are a bit rusty but they will get the chance to be aired again this year. It isn't just a new year this year. It is a new start, a new life. I am excited and I am nervous. I know that I will be made into something new but I also know I need to take time to reflect and recover. I was delivering the messages to myself in the words of that reading and that song.

Sunday, January 04, 2009

Feeling Magical

William and I were both sad to see the end of 'Christmas on CBEEBIES' today. All the Christmas songs had been replaced by the usual ones about numbers and recycling. Couldn't they have given us one more day of the festive stuff today? They sing about the 12 days of Christmas so they could have kept the song going until they were all over. Outside out door, all the Christmas decorations were being taken down and the bedspace occupied by the tree reopened. Normal business has been resumed with planned admissions for surgery, assessments and routine biopsies. There has been a really homely atmosphere on the ward over the last couple of weeks. The main bay had a huge tree standing next to the TV with a table of nibbles beside it. It really did have the feel of a living room.

I always feel a bit sad at the end of Christmas. I have a tradition to take down the decorations (which go up on December 1st) on the evening of 12th Night. I have one final little Christmassy moment with a glass of sherry and a mince pie whilst I watch, listen to or read something festive. Then I take it all down. I was going to do the same tomorrow but William fancied watching 'The Snowman'. We switched off the lights and huddled together beside our little tree. I didn't have my sherry but did nibble a mince pie as we watched it. I read on the side of a packet of Marks and Spencers mini mince pies that tradition holds that it is lucky to eat a pie on each of the 12 days of Chrismas. What a great excuse! 'The Snowman' is my ultimate film to induce the feeling of Christmas magic. It never fails. I found myself reliving the amazing Christmas we have had this year.

When you are an adult, something of the magic goes out of Christmas. It is still a wonderful time of year and there is lots to enjoy but the enchantment is left behind. This year, I found that magic again. It was amazing to be together with all three children again and being together made it truely special for all of us. We were forced to strip Christmas down to what is really important. In fact, we have all rediscovered what is really important about life. I am sure that this magic wil remain with us. We felt like the luckiest family alive on Christmas day. It was wonderful and that is the feeling I was reminded of whilst I sat with William today. I wanted to capture every element of how I felt and how this Christmas has felt. I want to remember it, to hold onto it. I am sure I will.

Transplants change people in amazing ways and change those close to them. I remember an image at the 'Transplant' art installation I went to with Hope. It was of a pair of twins and it was the twin who had not been transplanted who had experienced the biggest emotional journey. We have all been changed in the last seven weeks. We have all grown and I know that I feel very different inside than I ever have before. It is more than just raw emotion that will only exist at this moment in time. This experience has shaped me, is shaping me. I am looking forward to seeing where this will take me in the next twelve months.

In the meantime, we took our decorations down after our 'Snowman moment'. That was more than sufficient to be my last moment of Christmas magic. The cards on our walls and notice board have been replaced with drug and fluid balance charts. This is the week where I begin to get really organised with all the elements of William's care. I am hoping all this will have fallen into my responsibility by the end of the week. I am hoping we will be at home.

Thursday, January 01, 2009

Once again, the pictures tell the story

16th November, four days before William's transplant and on a day good enough for us to escape from the hospital to a nearby playground for a while during his couple of hours off TPN and IV antibiotics

January 1st 2009, six weeks after transplant
Escaping isolation to make the most of a deserted hospital playground on a cold New Year afternoon.

HAPPY NEW YEAR!!! May 2009 be happy and healthy for all of us. I had a quiet, peaceful and reflective close to 2008 and beginning of 2009. Above all, I feel full of hope for this year and have not felt as relaxed, positive and confident about myself and the months to follow in many years. I will blog about that tomorrow but, for now, I don't want to detract from the power of these pictures.