Friday, November 12, 2010
Wow, it's been a long time since I've updated this. To be honest, I didn't want to write here when William was so unwell over the summer. He had 8 weeks with his new bowel not working after a tummy bug and was back on TPN again. The internet connection was dicey to say the least and I just couldn't bring myself to write entries about a new Hickman Line, pouring stoma output and TPN. After an unsettled time, Wills is thriving more than ever and even beginning to find the confidence to start eating.
Our biggest news is that we have a new addition to the family and with the new start we hope he'll bring, I've decided to start a new blog. I'll leave you with that cliffhanger and invite you to hop over to the new blog and I'll see you there...
Saturday, June 26, 2010
If you've been following this blog for a while, you'll remember how William had a fair few ups and downs while he recovered from his transplant and how I likened it all to a game of snakes and ladders. We had a nemesis snake every time we tried to turn his feed above 15 mls per hour and became more well known than I would have liked in X-Ray and Theatre to identify and fix blockages. When you go for transplant assessment, it is made very clear to you that transplant, although a wonderful, life saving thing, is not a golden panacea and that having a transplant is swapping a set of chronic medical problems for another, all be it a less dangerous and immediately life threatening, set. Sometimes, it is all too easy to forget that that game of snakes and ladders goes on throughout life after transplant. We've just had a bit of a reality check and have hit a very long snake indeed, one of those you land on when you think you're home and dry in the game and that takes you all the way back to the first line of numbers.
William had his stoma revised in April because it had prolapsed. He'd never been right since then and seemed to be losing a lot through his stoma, especially after his special milk shakes (scandishakes). His weight had stuck a bit and I was concerned but not too worried because he seemed well in himself. I did have the feeling we may be facing a hospital admission before too long for a review and, perhaps, a change of feed. What I wasn't expecting was for Wills to wake one morning looking more dreadful than I've seen him since his transplant, white with dark rings under his eyes and floppy. I called his Dad who, luckily, wasn't at work and we took him to Chelsea and Westminster. He was very dehydrated and his stoma was pouring. Tests showed he had a lot of sugar in his stoma fluid, indicating he wasn't absorbing much at all and his blood sugar levels were low, even after a milk shake. I was worried he was rejecting his bowel and I wasn't the only one.
The next day, tests came back showing he had rotavirus. We all breathed a sigh of relief and he was started on immunoglobulins (factors in the blood that help fight infections) into his bowel to help him combat the bug. Things didn't settle and, as rotavirus can cause rejection, we were rushed by the most stomach churning blue light ambulance ride to Birmingham Children's Hospital for a scope and biopsies with the concern that he was rejecting. Thankfully, all the tests have shown that William has not had any rejection. It's always a relief to rule out the 'big R' but it's only half the story. Infection is another big worry after a transplant, especially infections that directly affect the transplanted organ. Wills had rotavirus but the team feel he has had another, probably norovirus, from about the same time he had his surgery and that his bowel has been grumbling about that before the rotavirus tipped it all over the edge. His bloods were the worse I have ever seen them to be, such a worry when these viruses, although nasty, are pretty normal and, even more worrying, are everywhere!
That snake really has taken us to one of the very first squares. Wills is back on TPN (the IV artificial feed he depended on before his transplant) while we wait for his bowel to be ready for feed again. He is having 5 mls an hour of the simplest of feeds, an 'elemental feed' made of nutrients at their very simplest, single molecule state. We'll wean it up very slowly and wean down the TPN but have a long way to go to the 50 mls per hour William needs. It was upsetting to see him back on TPN and see that white line in his chest again but he's lost 3 kg and needs some nutrition. It's even more upsetting to be away from Hope and Ellie for a prolonged stay in hospital again.
I am trying to remind myself that, although back to the start, we are still on the board. This is not William's own old bowel. This is a healthy bowel that looks great on the endoscopes but has just got a little unwell and needs some time to recover. I just hope we don't meet our nemesis snake again on the way back and struggle to get past that 15 mls per hour!
Friday, June 04, 2010
Wow, I have neglected this blog! I changed the name to something exciting and then didn't come back again. Sorry. I will attempt to do better.
Needless to say, we've been busy! I have been very busy writing features for various magazines. I have a real-life health feature in this week's Take a Break (available until Wednesday) and have more due to appear in the same magazine in the coming weeks, as well as Grazia, Cosmopolitan, Mail on Sunday YOU and Woman Alive. Next week, I aim to start a new blog as a companion to my writing. It will contain some 'behind the scenes' commentary on some of the features, together with snippets from press releases and my research etc. I promise to keep this one going a lot better than I have of late at the same time!
The biggest family news since my last blog is that William has finally been diagnosed with Asperger's Syndrome. There is a lot to come to terms with and think about and this will, no doubt, be the focus of many blogs over the coming days and weeks. The main thing I want to say about it today is that I am fast learning Asperger's is NOT a disorder! It's a different way of perceiving the world. William has a higher than average IQ, is creative and very funny - so funny, I think he should be a comedian! He is very intuitive in some ways but he is also has obsessions with things, especially Thomas the Tank Engine and 'disasters', likes things to happen in a way he predicts and struggles with the unpredictable nature of human social contact. He is a walking encyclopaedia on his 'chosen specialist subjects' and can read as well as his 10 year old sister. He has a photographic memory for words and only has to be told a word once and he has it. He would read as well as me if he was told the words, but, of course, wouldn't understand the content of 'The Girl With The Dragon Tattoo.' One of William's biggest challenges is that he is very sensitive to sensual over stimulation. In fact, over stimulation is the wrong word. It's not just that sound is louder and colours brighter. Some children with Asperger's and other forms of autism can actually feel noise as pain and I wouldn't be surprised if Wills feels the same, especially the kind of noise that vibrates. William is very stressed at our church and I fear we may have to find one that doesn't have the bright lights and vibrating organ we have. You can't simply expect him to behave if the environment is physically uncomfortable. Getting the balance right between normal childhood naughtiness and where he really is too uncomfortable will be a challenge. One thing we have already learned is that he can't cope with stopping an unfinished game or TV programme. He really gets very stressed. It's much easier on everyone to give him enough notice of bed time or going out for him to finish his activity and since we've adapted our home life to include that it's all been a lot easier here. I'm looking forward to finding out more ways of dealing with the more challenging aspects of Asperger's - especially how to cope with his 'melt downs.' We had a few of those today when I had to stop a game, for example to change a leaky bag and I have the pinch marks on my arm to show how distressed this can make him. He's always sorry after he's calmed down and doesn't want to react in that way.
Along side his Asperger's, we learned this week that William has delayed cognitive processing. This means that it takes him longer to respond to an instruction or a question. All the small bowel transplant recipients are showing the same and the team now believe it's due to dependence on the artificial, intravenous feed, TPN, when the brain is still developing in babyhood and toddlerhood. William will need longer to complete activities in school and for exams etc. It is heightened for him because he always comes back with complex and complicated responses to things and likes to be funny. It takes him a bit longer to put all that together. This is something else that is very important and useful for us to know about. It's sad that those years when he was so unwell have led to some impact on his development but it's a minor one and to be expected really. As with the Asperger's, my job now is to teach him to make the very best of his talents and abilities and how to cope with his differences and adapt around them so he can make the amazing contribution to the world that I know he can. I wouldn't want to change anything about William. He's a little character and his differences are a big part of what makes him that way.
Sunday, April 25, 2010
Do you like the new blog title? When I started this blog, our lives revolved around William and it quickly became a blog centred around life in hospital and sharing the daily news about his illness and fight back to life after transplant. I have talked a lot about the journey I, Hope and Ellie have been on with him but life is about so much more now.
It's very easy to get stuck in a rut when you have a child with any kind of additional need. Life can be exhausting and, with autism of Asperger Syndrome, it can seem easier at times to just let the child get on with their routines. This isn't good for anyone and this spring, our first home together and with Wills out of the isolation he was this time last year during the early days of his transplant recovery, I am determined to get us all out doing new things and meeting new people. We all need to broaden our horizons - hence the new blog title!
William's spiky ball
With William, you just have to get on with things, support his anxieties but throw him in the deep end because, with the right care and help to feel safe, he'll enjoy himself in the end. I did that literally on Friday and took the children swimming for the first time ever together. Wills swims at school but had never been in a busy public session before. It won't be long before he goes again. He's a natural water baby. Once he knew his arm bands would hold him up he was determined to move about independently and even had his face in blowing bubbles. It was so lovely to be doing something together that so many families take for granted. With the Swim4Life programme, the children can swim for free and pool membership is free for me on tax credits. All this means, we can enjoy the pool for just over £1 for the family. We'll be doing our best to go once a week.
On Saturday, we joined in with the first session of a new local arts project 'Life In London.' This will comprise off seven sessions over the summer, with activities to do together in between. The resulting work will be exhibited in Croydon. There is a project blog here so do go and have a look. Over the coming days, there will be some photos of us all taking part in drawing activities and a montage of images we took in a photo treasure hunt. There is plenty of space for more families to take part so, if you're in Croydon, do join in the fun. We'd love to meet you.
I knew William would find it difficult to settle and participate in the group. Group work at school is something he finds very challenging and he will often play at being asleep or stay silent when he's asked to talk to a group. He was especially upset because getting the tram into Croydon means shopping, not walking up to the Clock Tower to do art. This was a big change in routine, something he finds difficult. As I predicted, Wills wouldn't join in the hellos and staying on my knee, burying his face in my chest. He eventually began to peer towards the group more and more so I encouraged him to sit on his own chair. Hope had decided to play 'just a minute' so I suggested Wills spent a minute telling us all about Thomas and Friends. That did the trick. The minute Wills had held court with the group and entertained them by getting all the engine's numbers wrong on purpose, we were off! William joined in with some lovely art activities doing doodle patterns. I was really surprised. It was lovely seeing him do something completely different and being so relaxed and happy doing it. I got a fascinating insight into how he perceives things during the next activity. We had to feel in a bag and draw what we felt. The bag had smooth, bumpy and spiky balls and, while we all tried to draw what the object we felt must have looked like, Wills recorded what he felt. The picture above is a spiky ball. The one below is a smooth ball. I find it fascinating to see what he's done. It is bringing the developmental and cognitive psychology I studied and taught out from dormancy and getting me thinking.
William's smooth ball (no help was given at all)
William was really entertaining and, often, insightful. I feel more and more that the Asperger's syndrome is not a disorder. It's just different and deserves to be understood and embraced by others. Hope and Ellie did some fantastic drawings throughout the day and we all felt inspired to carry on exploring art together. We will certainly be doing all the activities asked of us between sessions. We want it to be a spring board into new activities we can join in together regularly.
We rushed off from the session to the church one of Hope's friends goes to. Her Mum leads a lovely monthly event called 'cafe worship' where people share tea, sing choruses, pray and listen to speakers. This month, Hope and I were invited along to talk about Wills and organ donation. Hope has been asking her friends to invite her to youth groups, churches and any other suitable event and is doing a big assembly in school on Friday. She is quite the campaigner these days. Hope did really well, I was so proud of her. Wills was good all the way through and Ellie coped very well hearing us relate what was a very difficult time for her too.
From cafe worship, we rushed home to do some filming. I'll tell you more about that later in the week but, once again, my children were super stars. Wills coped really well with disruption to his routines and enjoyed having more people around to entertain. Having settled Wills to bed, the girls and I were chilling with Britain's Got Talent when the door bell rang. It was the guy who had filmed us. I asked what he'd forgotten and he said, nothing, something was bugging him. He knew that he knew me. I thought he looked familiar but was astounded when he said that I'd been one of his lecturers when he was a student at Bath. That's the first time I've ever run into anyone I've taught. What a small world!! It was even smaller yesterday as one of the girls who organised it grew up just up the road and another was someone I met at Downing Street at the Downing Tweet party.
We were meant to be going to London today to cheer on those running for the fantastic Starlight Foundation and, much as I really wanted to, Wills needed down time today. He was fantastic yesterday but you need to be realistic pacing children like him. Not only does he get physically tired but he gets very emotionally tired. We all broadened our horizons yesterday and Wills especially. Today, he needed time to relax playing with his engines and watching his CBEEBIES programmes. I was pleased when he came to me to play some drawing games based on yesterday. He did hold what he learned. Days like that will open his mind and stretch him but they are stressful for him too and I need to remember that.
Sunday, April 11, 2010
From the very first moment the word 'transplant' was uttered as a potential option for William, we were told that no transplant comes without complications and that it isn't a golden cure. Living with a transplanted organ, especially one as complex as the bowel, is a chronic health condition in its own right. William depends on a daily cocktail of medications to keep him alive and we were told there would be times when things don't go as well as others. William had a lot of early complications and his bowel took a while to get working properly but, once it kicked in, we never really looked back. We had the odd little bumpy day but nothing too worrying. The main concern was always William's stoma. He has no colon so has an illeostomy, where the bowel comes through the skin to enable waste to drain into a bag. William's stoma has been prolapsed for over a year. The bowel is an internal organ and wasn't designed to hang out of a lively five year old and so it began to get damaged. We knew it would need fixing sooner or later and, last week, that time came.
William and I have been back in Birmingham for the last week. He now has a very tiny discrete little stoma which is fantastic. All went well. William is sore and tired but that is to be expected. The bowel hates being handled. At first it pulls a total strop and doesn't work at all. Then it pours. William's bowel is at the pouring stage at the moment. I have been reassured by our team that it will settle but it is hard to relax when you've been there before and it didn't improve. Old memories are hard to ignore. I'll be relieved when things start to normalise again. William is hundreds of times better now than before transplant - a different child! The little set backs are worrying though as you are never totally sure they won't lead to anything more. We've been so lucky over the last year as Wills has been so very well and stable. We've got used to it and it's upsetting to see him a little more vulnerable than he has been. Some of the friends we've made over the last couple of years are facing much bigger hurdles and complications and they are very much in my thoughts now. This is nothing compared to what they have to get through.
It is fantastic to be home from hospital but I do tend to feel a little nervous whenever we come back with things a little bit different and some recovery still to be done. I think it feels even more scary when there is just one of you. I do call Paul to sound things out when I'm concerned about Wills but the decisions and responsibilities totally rest on my shoulders now and I have to juggle the girls' needs in there too. It's not always easy. I find the practical things are easier on my own. I have a routine and, although school mornings are a bit frazzled, it works. The emotional worry can be hard though. At the end of the evening, it's just me and there is a lot of time and space to brood. The girls have been at Mum and Dad's and are now off to their own Dad's for a week so a little concern over Wills is coinciding with a lot of quiet evenings.
This blog has talked a lot about post transplant complications and worries. These are all normal and part of the journey. It is a journey and one that would not have been possible without our wonderful donor and her family who said yes when asked during the darkest time in their life if they would be willing to save other people's lives. Had they not have said yes, we wouldn't have had a transplant and a William to be worried about. I was very distressed today to read this Of course, my heart goes out to anyone who may have agreed to donate all of their precious loved one's organs and are now being told there were specific organs their relations didn't want to donate. I am truly very sad for them. However, these numbers are tiny and it is a specific administrative problem that has now come to light and is being sorted. I think the reports have been blown up out of proportion by those who are rubbing their hands with glee at the thought of being able to try and blame the government for something so upsetting and emotive. To anyone using this situation as a part of their election campaign, I want to say how worried I am about their tactics. There are 10 000 people on transplant waiting lists. Of those, 1000 die each year - 3 a day! The way this report has been reported has created a real danger of putting people off registering as an organ donors. Going on to use it to undermine the work the present government has done in promoting organ donation is only increasing this danger. This issue is not something that I feel should be bought into the negative campaigning the Tories and their supporting papers are doing. If people are deterred from joining the organ donor register or saying yes if asked about donating their loved one's organs then people will die. The lovely Tor is on GMTV at 6.45 tomorrow morning to talk about her wait for a double lung transplant and do her best to make sure this doesn't happen. Please tell your friends about her. Tell them about William who is only here because of our wonderful donor. Tell the how grateful we are and how we think of her and her family every single day. Tell people not to be put off from saving lives if they or their loved one's were to die and ask them to sign the register. A lot of people are very upset and worried about the impact of this report. Please help me to show them they don't need to be.
Friday, April 02, 2010
One of the most moving things I've ever seen was the Good Friday drama and walk of witness we watched in Croydon today. We didn't follow it all because it would have been too much for William but we caught the final section in the city centre. We arrived just as the procession did. Jesus' bloodied dead body was carried, swathed in black to a slow drum beat. It was incredibly emotional and the most faith affirming experience I've had in a long time. I've struggled to take time out to prepare properly for Easter this year. I've been somewhat distracted by William's hospital admission being on Easter Monday. It's somewhat hijacked Easter. I'm glad I had that powerful moment today. I always think you have to experience something over Holy Week and Good Friday to really appreciate Easter for what it is. I've had that now and, even though the next few days will be dominated by preparing William for hospital, I will feel that new life and revival that Easter brings.
As well as being Good Friday, today was World Autism Awareness Day. William asked my today why they crucified Jesus. One of the reasons I gave was that they didn't understand him and so were scared by them. There is a parallel there for William. He is charming, funny and engaging and everyone who meets him adores him. But, there are elements of his behaviour that the world doesn't understand. His rigidity, his obsessions, his utter panic and distress when things don't go the way he anticipated look now like an immature tantrum but, as he gets older, they may seem threatening, even frightening to people. People will think William odd. He's not odd. William just sees the world a little bit differently to most others. He sees things in back and white and struggles with things that don't fit rules and structure. Like many people with Asperger Syndrome, William is extremely intelligent and gifted and has a huge amount to offer society. The greater society's understanding of autism and Asperger Syndrome, the easier it will be for William and those around him to communicate and appreciate each other. I'm grateful for those who have supported today. It gives me hope that William will grow up in a world that understands him and are prepared to adapt to his needs. He is certainly working very hard to adapt to the needs and expectations of those around him so it's only fair we all try a little too. Please visit the National Autistic Society and learn three things you didn't know about autism.
William wasn't moved by Good Friday at all. Our curate told the children the story of Jesus' death, explaining it's a sad story. William turned to me and said;
"But Mummy, it's not a sad story at all. Jesus had to die didn't he. It had to happen that way."
When I asked why, he replied;
"Because he had to die so we can see him when we die."
Maybe sometimes just accepting things and not looking further than the black and white is the best thing. You could read several theology books focusing purely on that William had summed up perfectly in two sentences.
Saturday, March 27, 2010
A few weeks ago, I booked for Hope, Ellie, William and I to go on our first ever holiday together - the first time we've been ever to get away in six years. Thomas the Tank Engine is coming to Butlins and I know a little boy who adores Thomas and friends! I thought Butlins would be an easy holiday for the first with all the medicines and feed and, as I don't drive, we could get there easily by train and then have all we need on site. With everything booked for Easter Monday until the following Friday, I was devastated to hear yesterday that there would be a national rail strike that week. We'd be able to get there OK but the strike could prevent us returning home. I spent ages on the phone working out alternatives and came up with a contingency plan to stay an extra night if necessary. It would add to the cost but no 'spring of discontent' was going to ruin this special holiday!
Before William's transplant I would never have dared book anything any further than a day away. Every time we ever planned anything, he always ended up in hospital and we learned it was better not to set ourselves up for the disappointment. William is doing really well after transplant. The only thing that is causing slight concern is that the bowel that comes through his tummy to form his illeostomy has been prolapsed for quite some time now and has a few sores where the delicate internal tissue rubs on his clothes. [For any new readers, William's colon was removed at the time of his transplant but wasn't replaced. You can cope fine without a colon with the end of the small bowel being bought out through the skin to form an illeosomy] When we were at transplant clinic last week, we discussed the prolapse and our consultant said he felt it was time we thought about fixing it. He asked me to send a photo for him to discuss with the surgeon and then come back to me with a plan. I was surprised this morning to get an admission letter for William to go to Birmingham on 5th April for surgery. The day we were meant to be going to Butlins!
My initial reaction was to call the team on Monday and ask for this admission to be postponed. Then I thought about it a bit more. Being on my own, I can't cope with these admissions without Mum and Dad being fantastic and looking after the girls and they are away for 3 weeks from the end of April. Ellie has her SATS in May and then will begin her preparation for secondary school. It would be awful for her to be away then and miss meetings and visits to the new school. The girls are looking forward to a week with Grandma and Granddad and they're off to their Dad's for the second week of the holidays. If it wasn't for the fact we'd booked our holiday, this admission is actually perfect timing. Thankfully, a quick call and our holiday was rebooked for the first week in August. Thomas won't be there but I think it will be better for William overall as his plaster casts will be off so he can go in the pool and play on the beach.
With the holiday sorted, I'm now planning how I'll juggle work. I have lots of fantastic stories that need working into pitches so I'll get as much as I can worked up and pitched to editors this week. Hopefully, some will be commissioned and I'll be able to do the interviews, write them up and write features while we're away. The 3G reception is pretty ropey at the hospital so I'll have to negotiated an hour or so away from Wills to find an internet cafe if I need file any copy to meet a deadline. A couple of new DVDs will help me win a few hours. For the most of the week, I'll concentrate on my novel. I think one big push during the evenings while Wills is asleep and I'll have the first full draft finished. I can also research some more agents and work out a strategy towards getting a publishing deal by the end of the year. There are two main reasons why I'm a freelance writer. I am passionate about writing and telling stories and the flexibility of freelancing is essential to my life. My work can be worked around William being home if he's unwell, hospital appointments and admissions. I'm lucky this time to have a week to manage the work I have on so I cam make it easier to take with me to the hospital and assess what can be realistically done from there, what needs to be done before we go and what I can leave for when we get back.
I'm pretty confident I can juggle everything and not get behind during the week to ten day stay they've predicted. The girls will be fine for that long, and would have been away for half of the time anyway. I just hope William's bowel settles quickly after the operation so it doesn't drag on. At least our new holiday is several months away so we should all be back on track by then.