'Gifts of Life'

Those who know me know that I never do things by halves. I had a bit of an idea a couple of weeks ago. After testing the water a bit, it has now grown into this...This is my project plan that is now out there in the world and people are already getting involved. It is hugely ambitious but, with a bit of help and support, I know I can pull it off. I am determined to. It could be really powerful and photography is the way I have been expressing our journey for quite some time now. It is time to take it wider. If you can help with any aspect then please let me know. It is going to be fun.

'Gifts of Life'


Aim

The aim of the project will be to capture people waiting for their gifts of life or who have received their gifts. I plan to spend a little time with participants, getting to know by having a cofee, a drink or some lunch or simply sharing a converstion before I get the camera. This is so I can capture the essense of their personality and the imact waiting for or having received their gift has on their life. The photos will be used in exhibitions and will form a photo book to create a piece of art aimed at raising awareness of organ donation. I hope to use this specifically to support and promote Live Life Then Give Life. All participants will be asked to sign a 'model release consent form' to give consent for their pictures to be used. The Photos The photos will consist of portraits, candid shots and shots of medical equipment, medications, treatment or hobbies and activities that are difficult pre-transplant and being enjoyed post. It will depend on what is important to capture to represent each individual. I will take a lot of pictures during each shoot to make sure I capture what is important (oh the joys of digital!)

Time Scales

Most of the photos will be taken during June and July 2009 (once William is out of isolation after his transplant and back at school enabling Mummy to get out and about again ) I may be able to take some pictures with people local to me (London) before then. I want to be able to include people all over the UK but this is being funded out of my own pocket and I don't drive so there will be limitations. Photos will be processed in August and September I hope to be able to hold some exhibitions in December to coincide with Christmas and the theme of a gift. Once the exhibtion has been created it can be put on wherever and whenever there is an opportunity.

Dissemination

The work will be compiled into an exhition that can be reused whenever there is an opportunity. There will also be a photo book that will be sold along side the exhibitions. The book will help offset costs and if there is any profit it will be donated to LLTGL. A facebook group to promote the project will be opened at the end of March 2009 and there will be a blog to enable people to follow the progress and see some of the work in progress.

How You Can Help and Get Involved

By being a participant and being photographed.

Helping promote the project among your networks

Helping organise an exhibition in your locality

If anyone knows of any body or company that may be able to sponsor any aspect of the project, please do let me know. I will make this as good as I can within my own finance but there are a lot of costs involved, especially in printing and framing pictures for an exhibition, potentially hiring a venue and in the up front cost of printing promotional materials and the photo books. Maybe you know of somewhere who would house and exhibition for free? Maybe you work for a company or firm who may be able to offer some sponsorship. I don't have any experience in this are of the project but just have a passion and a burn to create this and use it to promote awareness.

If anyone has any ideas please do let me know. I am not too proud to be helped in anyway or for someone to make any suggestions. Like I say, I just have a huge will to make it happen. It is hugely ambitious but I think it could be really powerful.

The Brightest of Mothering Sundays

Mothering Sunday Dawn

You Know I Don't Like Nystatin

Pensive At The Dinner Table

Looking and Feeling Great

After Dinner Games

Today, I had all my three children with me celebrating Mothering Sunday. This time last year, I would never have dreamed we would have seen William looking like this. The first thing I saw when I got up was the sun streaming into his bedroom, bathing it in colour and his little hand and foot sticking up over the cot, pointing towards the drip stand where his TPN is now replaced by a feed that he is absorbing SO well he is putting weight on too fast. We had a roast at lunch time and a 'Grandma's tea' of home made bread and treacle scones with cakes from the Sunday School bake sale. The children really love these meal times (once William has been prized from his beloved CBEEBIES) and often sit playing games while I clear up. William even managed five tiny licks of yogurt.

Hope and I went to a church quiet day yesterday and lit a candle for our donor's family, especially thinking of her Mother. We dedicated Christmas tree lights and Christmas and a candle today. I think light is going to be central to the way we choose to remember William's donor on these special days. That gift filled him with light so it is very appropriate.

Moving up a couple more ladders

It has been a crazy couple of days. Yesterday, we headed up the M40 to Birmingham for our first clinic appointment since William's transplant, having missed the first one as we were back on the ward following his pneumonia. All is going very well. We are now able to stop a few of the fourteen medicines he has been on every day and reduce the doses of a couple more. We have stopped an antifungal drug, the drug he was on to thin his blood, allowing it to flow more easily through his new blood vessels, and the drug he has been on for the last few years to protect his liver from the impact of TPN. We did stop this one immediately post transplant but his liver got a bit cross about it. For the first time in a year, his liver function tests are not normal so we can stop it. We have reduced the codeine that works with another drug to slow his intestines so they can absorb effectively and have reduced his dreaded 'nystatin', an antifungal he has to take, kicking and screaming, in his mouth.

As well as the meds, we have also reduced his feed as, after four years of struggling to get weight on him, he is now being over fed by his gastrostomy and putting it on too fast. He is down from 3 to 2 bolus feeds a day so I am hoping he will begin to develop some hunger and be tempted to try something to eat.

The only thing we have needed to increase is his insulin as his blood sugars are still a little too high. He now has to have two injections a day, rather than one, and may need to start another insulin with his feeds. His reaction to that was 'That is not a good change!" My feelings are that is is a very small price to pay for a transplant that has moved him along from lookingand feeling like this:

to this:

So pink and full of life. I still get excited about it every day. Everyone is so pleased with him that we don't have to go to Birmingham until his next admission for scopes and biopsies in April/May and only have to go to Chelsea once a month now. He will continue to have weekly blood tests and be weighed at home. He does still have to stay in isolation until the end of May but time is passing and we will soon be out and about again, not that I want to wish away a single moment of our lives together.

In my last entry, I shared that I was going to take the plunge and put some prints into the competition at the camera club I have just joined. Well, I did and managed to get the maximum marks of 12 for one of William running along the corridoor after a blood and only 1/2 mark short for a portrait of him, entitled 'waiting'. I got merit certificates to stick on the back of the mounts. I was really surprised and very happy. The judge spoke to me afterwards and told me I had an empathy with people when taking pictures and capturing them well and that I should keep going taking pictures of my children and other projects involving people. I am really interested in street photography and 'urban portraits' and hope to concentrate on these areas in my photography course. I also want to develop the work I have done in capturing our transplant journey and have an idea. All will be revealed soon in my 'arty farty blog' so watch this space. In the meantime, here are the two images I entered. I have posted them here before but, for anyone interested, is saves you scrolling through all my ramblings to find them. I love the portrait the more I look at it. A picture does say 1000 words. That was what it was like for William to be waiting. The high resolution version shows the sore lips and the tracks of dried tears. I have taken a lot of pictures of him post transplant but haven't quite captured what life is like for him now in that one single image that says it all. I hope I can soon as the comparison will be a powerful thing.

Busy times

Gosh, it has been a week since I last posted! Well, as I said in the last post - we have been living life to the full! The last week has seen me beginning a mega work catch up. I have had a really productive time catching up and moving things forward for The Brompton Fountain I have also been working on my theology course and some photography.

I joined The Croydon Camera Club and am going to take the plunge and submit some of my photos into the print competition tommorrow. It works in rounds and is way in so the points won't count to anything but it will be great to get the feedback. That is what I need as I am developing my skills.

Talking of photos, I have had over 200 printed of all the various aspects of William's transplant journey to put together in an album, some frames and for diaries and work books for my various courses. When the children have gone to bed, I am going to spread them all over the floor and get them into order (why do they never stay in order when they are printed?!). Thankfully, I still have them in dated files on the computer.

Tommorrow will be another big Brompton Fountain work day but I will then start using my organised photo albums and this blog to begin telling our story. First I need to write the article I promised Live Life Then Give Life and, as anyone who has had a look at their website lately will have noticed, I need to re-write our story so that it can be moved from the 'waiting' to 'recipient' section. Then, along with other bits and pieces along the way, I aim to write a book of our story, together with some photos and poems. Oh, and I want to do a more reflective photo book..... now you can see why it has been a week since I last posted on here!!!

Hope, Ellie and I went to a lovely Christening on Sunday. It was so nice to be able to say yes to the invitation.

Almost forgot to say, William is still great. I guess it shows how great he is and how much life is settling down that I did almost forget to mention this. We are off to Birmingham for a check up on Thursday.

Living life to the full!

The children having a lovely time at CHASE Hospice at the weekend, and William even licking his fingers after dipping them in yogurt.

I can't believe a week has almost passed since I last blogged. Wills continues to thrive. We can't believe how much life and energy he has not. It is wonderful to see. His personality was always comic and full of fun but he now has a new vibrancy. We spent the last weekend at our hospice and, as you can see, all the children (and their Mum) had a really happy time. I feel a lot lighter now. A lot of worry has gone from all of us. Whatever happens now, it was right for William to have the transplant. Of course, there will always be uncertainties for anyone after transplant but how ever many years he has now will be years of living life to the full. We all are. It feels a lot like life has begun again for us all. Before coming on my blog, I booked tickets to take Hope to see Moya Brennan in a couple of weeks time. I just would not have taken a risk on booking something like that during the last couple of years as it would have been so likely William would have been in hospital when the day came. (As soon as I had booked them I realised Hope is going to be in France on her French exchange 'Doh!' so this will now be a treat for Ellie.)

In my last blog I mentioned how I am trying to put all the pieces together and build my own life. Well, I had a really exciting meeting with my mentor for theological reflection and spirituality in my theology and vocation course. She was really excited by all the material I have collected over the last six months; the writing, photographs and other items. She gave me some fantastic guidelines on how to use it all to create the reflections I need for my course but also to use as the source and foundation for many more projects. I am going to re-start using my 'arty farty blog' - 'MyJourney With William, an Exploration' to share how this work develops so keep a look out over there if you are interested in the creative and spiritual elements of the journey.

Putting pieces together

The last couple of days have been very productive for me in terms of work and writing. I have really struggled for the last few months to get things completed. I have been gathering experiences and writing chunks of things but these things were all in bits and pieces in my mind. What I have struggled with is bringing things together to form a complete piece of work or writing. I seem to flit between these chunks and do a bit of this and a bit of that but not really concentrate and bring it all together. I think a lot of it is the stress and intensity of life over the last couple of years and also the fact that snippits of time are all I had to work in whilst I was in hospital with William. I had to adapt to that. I have sat down with the Brompton Fountain 3 year strategy, which ends at the end of this year. I have actually done most of what I set out to do and the rest can be caught up with during this year. What is clear though is that the things I have managed to do lately have been things that could be done in bits and pieces. This week has been good as I have managed again to sit down and concentrate for long periods of time and complete fuller and more complete pieces of work.

Life feels the same. There are lots of bits and pieces that slowly need to be bought together. Some of them are clear where they fit but others not so. What is needed now is time to really reflect and to sit back and get some perspective. Lent is a time when Christians reflect on their lives and how they can be improved in terms of their relationship with God. Lent has never been so timely for me. I am using it to put the pieces of my spriritual life together. One of the books I am currently reading is 'The Day is Yours' by Ian Stackhouse. This is all about living each day at a time and using the natural rhythmns of the day to do so. This is something I am finding really helpful. One foot in front of the other, one step at a time, day by day and concentrating on the here and now. These things have been the biggest lessons I have taken from the last few months and years. I intend to live each day to the full and let those pieces fall into place naturally. The dust needs time to settle before the patterns it leaves behind can be seen.

Beginning to Feel Settled

Still pink and happy!

Having fun with Hope - even letting her play engines

Making Thomas cakes

That smile again - meal times are such fun (even if you are not really eating just yet)

A walk in the railway park at the back of our house - we will be able to venture further soon

Hope and Ellie encouraging Wills to lick his fingers after he has dipped them in his yogurt - he did it a few times too!

Having fun building Thomas

It has been another busy and happy weekend. We have been home two weeks today - that is the longest Wills has been home for over a year. We used to get nervous after a couple of days of him being well as it never lasted more than that. Then, we would watch him slowly decline until he was too poorly to be at home, that was as long as he hadn't had a septic shock incident that caused us to dial 999 before then! I haven't quite got that out of my system and keep waiting to find him unwell. I know we will have some worries over the next few years but, right now I am celebrating the fact he has been full of beans for longer than he has ever been in his life. It is hard to relax and remember that there is no reason why he should suddenly get so very unwell so suddenly as he did with all the line infections and I find myself rushing in with the thermometer whenever the poor boy pauses a little too long or looks more tired than usual. I am beginning to feel more settled.

We are certainly getting into routine with the new medical regime and weekly schedules. William has the wonderful Sue, his school one to one health care assistant, during week days but I am only allowed to go out if I am in easy reach of home. So, for most of the time, Addiscombe is my world for the next three months. Well, we have a lovely coffee shop/cafe, a library, three parks, a supermarket, butcher, grocery shop, hairdresser and other local shops in a parade (sadly now minus Woolies - where do you go for that new CD/DVD or birthday pressie for a school friend these days???). I am getting back into my work and writing routine. I do miss other people. It is SO hard not going to church. I miss it so much, especially over Lent. I am hoping to meet up with some friends over the next week - for lunch in that cafe. Paul is around a bit more over the enxt few weeks so I will even get the chance to get into London with my camera to take some shots for my course, to attend some Brompton Fountain meetings and go to some galleries.

Emotionally, the enormity of the last few years has hit home quite hard now I can relax a bit. It was never safe to really get upset over things because, once you start how do you stop? Now, I find I sob at the smallest things. I feel really quite uncomfortable when I think of TPN and all we did and all William had to go through. I know we will have our ups and downs now but at least we have more ups than downs. I feel some guilt about those we have left behind on our journey. For those who never got that call in time, for those we have shared time in hospital with and who lost their fight, for David who shared something of William's journey and had a very special bond with him but lost his battle with cancer so suddenly... so many people. They will always be part of us and close to our hearts. On a happier note, there are also a lot of people who have helped us along on our journey. Many of whom were strangers of new friends at the start and have become close friends now. I am currently enjoying writing lots of letters and cards to those who were there with us, holding our hands, cheering us up and keeping us going. See, there I go again, getting all emotional and reflective... Well, it has been a crazy time and we are getting far away from the intensity now to be able to think about what we have been through and how it will shape our future.

I know I have to use this and I am spending Lent thinking and praying about what I should be doing now. More about that later in the week. I have waffled on long enough and medicines need doing now. Enjoy the photos...

Thoughts for The Camerons

David Cameron and his family are in my thoughts and prayers. It is so sad. What a lovely, vibrant boy Ivan looked to have been.

I have actually run out of fingers to count the number of families I know who have lost a child. It comes from living the life we have led over the last few years and making the friends I have made. My thoughts are with all those angels and their families today.

If it were not for one family who lost their own little girl in November last year, we could, by now, have lost our little son and brother. That family are amazing. In their grief, they gave him back to us and , although unknown, we will carry them close to our hearts forever.

Spontaneous chocolate pancake party

Yesterday, the girls and I decided to give up chocolate for Lent. We also decided to have a chocolate blow out today and eat lots of pancakes. We are doing the 'Love Life Live Lent' books and have a family book full of activities. One was to hold a pancake party. Before now this would have been a none starter but, why not I thought! At 7pm yesterday, we decided to go for it and each of them could have one friend (as a real party would be too many people around for William). It has been a long while before we did anything so spontaneous!

Hope and Ellie have not had too many friends round over the last couple of years as Wills, when home at all, was too unwell and tea times were dominated by TPN. It was lovely today to be able to properly entertain their friends and spend time cooking them pancakes whilst Wills busied around us all with his new found energy. We had savoury pancakes stuffed with tuna and cheese, pancakes smothered in chocolate and pancakes with lemon and sugar. Everyone was relaxed and happy and it was so lovely. Ellie is off to a friends house tomorrow and Hope has already spent most of the weekend with her friends so they are settling back well.

William did not fancy joining the four girls at the table for pancakes but did have a good few licks of a strawberry lolly this morning, even declaring it as 'delicious'. He is also now beginning to really enjoy having his teeth cleaned so these are very tiny steps towards eating.

Life is there for the taking

Playing on the quiet side of the playground

Learning what to do with an egg

A walk in the park

Cuddle with Big Sis

Enjoying the winter sun in the garden

Singing and dancing to 'Mama Mia'
(with two sisters, you just have to join in with these things!)

Joining in with family meal times (even it not eating it yet)

Rediscovering long forgotton about toys

Once again, the story is in the pictures. This was our first weekend together as a family since September, and there were precious few of them before that. It has been lovely. For the first time since William was born we are able to sit down together at meal times. It was always a case before of doing the TPN and then rushing to try and get something cooked for the girls or giving them something already prepared whilst I was doing TPN. William's bed time routine, including the TPN and IV drugs used to take about an hour. Now, we can sit down at 6.30 and eat before I do William's feed and medicine and get him to bed. William has a small plate of whatever we are eating. He plays with it and is learning the skills of eating with a knife and fork. I am sure he will eventually begin to have a taste. He does fully join in with the social aspect of the meal and that is equally important.

We are not yet allowed to take William on public transport or anywhere that lots of people will be. As it was such a lovely day on Saturday, we did venture out for a walk in the park and even managed to find the quiet side of the playground. A couple of children did come on over to join in but I explained things to their parents so William could play for a little while. He didn't keep them from their game for too long. William was really nervous of falling. He does lack some of the confidence he used to have when playing on swings and being put on other toys in the park. It is not surprising really after all his body has been through.

William has been inseparable from his sisters this weekend. He has really missed them. We have all missed each other. The girls have grown up loads, especially Hope who will not leave her bedroom without a full face of make up anymore. I have missed so much of their lives and want to hold on to every minute now. They have been bought up by Mum and Dad as much as me over the last three years and I know that they will always have a special bond with them, beyond that of Grandma and Grandad now. I would never have been able to get through these years without knowing that the girls were safe, happy and being looked after with them. Much as I missed them, I knew they were OK and in the very best hands.

Hope, Ellie and I started to make up for lost time yesterday with a girle night complete with Chinese takeaway, chocolate and the sing-a-long version of 'Mama Mia'. We had a great time. I watched that film in our room in the hospital and found it a bit lame in the story line and more of a vehicle for the songs. I came away thinking I would rather have listed to an ABBA CD. I now know that the film comes alive when watching it with the girls you most care about and having a good old sing and laugh. It is our film of the moment and we have also downloaded the soundtrack. Even William joins in the singing and dancing and I am enjoying singing out loud whilst cleaning and tidying up - something I really missed in the hospital. It is so good to be doing the normal little things in life again.

We ended the weekend with a roast. The last two times I have tried to cook a roast, the food ended up being wasted as we ended up phoning ambulances before the chicken was cooked. Likewise, so many fridge loads of food have been thrown away after being admitted to hospital that I had begun to shop daily to avoid the waste. I am slowly beginning to relax and not feel like the next emergency must be due within the next few days. There will be ups and downs and William will have emergencies in the next couple of years but there is going to be a lot of stability and weekends like this in between. Life is there for the taking again.

The smiles tell it all...

William four days before his transplant

And now!

Look at my rosey cheeks!


So much energy to play

There is lots to say about settling back home after the transplant and so many months away. I will blog about finding my floor (eventually!) under the layers of semi unpacked hospital bags, the struggles with getting William's complex medication regime prescribed, the emotional highs and lows of sorting though all the TPN bits and pieces and IV antibiotics that serve to remind how poorly William was before his transplant. I will get on to all of this but, for now, William's smiles say all that needs to be said!

We are home - an intend to stay here this time!!!

We are home and William is on tip top form!!! This is a quick blog. The house is a tip - I had to put the bags on the piles and clutter that were the remains the unpacking and sorting last time that was cut short so suddenly when Wills became unwell. I have cleared the space to make his feeds and do his meds and that is about it. Paul cooked a curry and I have had a couple of glasses of wine so now I am pretty sleepy. Off to bed then tomorrow is a day of sorting ourselves out.

The last few days in hospital were very reflective and emotional ones for me - more to come but, for now, we are home. Hooray!!!!

No Mention of the H Word

We are not going anywhere tomorrow as William's stoma output is too high. We are persevering with the feed for another day or two and have increased the medicine to slow down his gut. No more speculation. The next time I mention the H word on this blog will be to say we are already there!!

Meanwhile, we held a bake sale for Live Life The Give Life today and raised over £40. I have some lovely pics trapped on my phone. It was loads of fun and nurses, physios and other families made us cakes to sell and nearly everyone involved in the ward enjoyed the yummy goodies on offer. This is a transplant ward so awareness is high, at the moment there are five children in here recovering from recent transplants and at least two who have had transplants in the past. There are at least another two being assessed for transplants. It was great to be able to introduce Live Life The Give Life to people on both sides of the transplant experience.

The exclamation marks below should be question marks

Two more sleeps???? William's stoma is pouring a bit since the feed was changed. Please, please stop!!! If it gets close to that litre we will NOT be going home in 2 more sleeps.

Two Sleeps!

William's stoma output is just about borderline OK so we are pressing forward and trying the new feed. The plan is to go home on Wednesday. Two more sleeps! Hooray! We seem to be on the easy path for now and, as long as his output stays down and he grows, we will stay on it. Sure, there will be setbacks along the way but we are on our way now

You make some great friends among other parents here. We have seen a fair bit of a lovely family who are experiencing issues with their child who is 4 years on from her liver and bowel transplant. She had an op to clear a blockage on Saturday morning and was really poorly overnight. She ended up in respiratory distress this morning with crash team and everything. Everyone thought her bowel had burst and she was rushed into theatre. All seemed normal so no-one has any idea what caused her to be so critically unwell this morning. These children are enigmas. We all have to treasure each moment we have with them.

Crunch Time

OK, lots of prayers and positive thoughts please. William is really well in himself but it is a crunch time. Since we took fat out of his feed his stoma output has been fine. We have now but it back in, but long chain fat rather than the medium chain fats in his previous feed. If he tolerates it, we can change to a 'ready to hang feed (nutrini) on Monday and we will be home by Wednesday, as long as his stoma output and blood sugars stay stable. If his stoma output gets too high (over a litre) we will have to take fat out again and go back to the drawing board. The solution to that scenario may be fat free feed with his fats delivered intravenously - i.e. parenteral nutrition one or two nights a week. This would still be hugely better than 20-24 hours parenteral nutrition a day but it would be such a shame if we had to go back to it at all. His new bowel should be able to absorb all his nutrients and it was until he got the pneumonia. His output is up since the fat has gone in and the next couple of days will be critical in seeing if he can cope with it or not. It really is a cross roads and I so, so hope we go down the easy street. It is about time! If we are forced down the harder one we could be here for weeks more and we all need to be at home together now. So, loads of prayers and positive vibes please....

Thanks so much for the lovely post William has had. It has so cheered him up. I have addresses for most people who kindly sent him things to keep him busy and William is eve more busy now making thank-you cards. I must thank Ann and Steve for the lovely CDs as I don't seem to have your address. The CD a collection of old classic children's songs. Many of them bring back memories of singing them with my Grandparents and William is having a really good laugh to tracks such as 'Jake the Peg' and 'Right Said Fred'.

We did manage to escape on Thursday to play in the snow and make a snowman whom William named Cyril. This picture was taken by Paul. William hasn't been eating snow - it is the foamy saliva that he seems to like to hold in his mouth and refuse to swallow - nice! I do have lots more pictures but they are all trapped on my mobile phone (I can't work out how to send them to my computer by bluetooth). I didn't bring my camera as we thought this hospital stay was going to be a few days, not another month! Let's hope that things work out so as it will only be a few days more.

The date was with...

The date, of course, was with Paul. Lee Mead would have been nice but I would have had to tell him that I was unavailable last night. Paul and I have spent very little time together over the last 3 years. I have been living in hospital for long periods, most of the time over the last 18 months and, even when home, most of our conversation has been that of anguished parents over our son. A lot of our own life, dreams and ambitions have gone along in parallel.I'm not sure even how well we know each other these days and, now William has had his transplant, we have to rebuild this part of our lives as well. We have to start at the beginning ans see where we go. So, yesterday was a 'hot date' - one rule - William was not to be the subject of the conversation. We learned things we had missed about each other over the last year as well as things we had misunderstood. It was an important thing to do.

Hot Date?

Thank-you so much those who have sent William cards, letters and bits and bobs to do. He was particularly fed up with life this morning, particularly blood sugars tests, insulin injections and generally being poked and prodded. The post arrived with a big pile for William and it really put a smile back on his face. He is so touched that people care enough to write to thanks.

He is likely to be here another week. Having come to the conclusion that it is unlikely (they never say never) he is experiencing any rejection at the moment and doesn't seem to have any infection, we are not experiementing with his feed. We test his sugar absorption each day and that is fine, fine enough to send his blood sugars up too high as well! Protein is easy to absorb so the finger is pointing at the fat. He has had fat removed from his feed for the next 48 hours and, so far, his output is back to normal. If this remains the case, we will try a different sort of fat. He remains fine in himself but this tweaking takes time and is frustrating.

I have a hot date tonight so watch this space....

Asking a couple of favours...

William's stoma output looked settled on Saturday and the consultant said we would go home if it stayed like that for a couple of days. William is very sensitive to such 'fate tempting' comments. One of the Chelsea consultants is famous for ending the Friday ward round with 'have a quiet weekend' to which William almost always did the exact opposite. The most such comment was the night we got the call when we had been discussing whether or not William should be suspended whilst in theatre having his perforated bowel fixed. Another of the Chelsea consultants ended that discussion with 'It doesn't matter anyway, you'll still be waiting in 6 months time.' We all know what happened just a couple of hours later!! Well, saying such a thing about the stoma output was just one of these occasions and William poured out more than ever in the last 24 hours. We are exhausting possible causes and William seems well in himself so we are beginning to reach the conclusion that it is just the way his bowel is at the moment and we need to adjust his protocol from hospitalisation and IV fluids above 1 litre output to 1.5 litres. First, we need to further observe his pattern and make sure it is a safe decision so we will be here a bit longer than a couple more days. It is likely to be the end of this week or beginning of next before we can go (of course, if his stoma output does settle it could be earlier).

There are a couple of things I would love it if you could do for us. The first is quick and easy. William had a lot of post after his transplant and then, of course, it was Christmas. The daily post really cheered him up and he is a bit fed up at the moment. He asked me for some letters at the end of last week but I was hoping we would be home quicker than post would reach us. Now we know we will be here a few more days it would be great if some of you could send him a card or a quick letter.

The address is
William M
Ward 8
Birmingham Children's Hospital
Steelhouse Lane
Birmingham
B4 6NH

The other thing will take a bit more time but will be lots of fun. The lovely people at Live Life Then Give Life are raising money to help them with their organ donation awareness work by asking people to hold a bake sale on Valentine's Day. Please visit their blog here for more info. I would do this but it may be tricky timing if we are only just home so I am hoping some of those who have been following our story here may do one instead.

Thank-you.

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.