Some photos as promised!

As promised, here are some pictures of things that I really should have blogged more about! The first is Wills at the firestation open day last week. This was after I had just run a 10 mile race on a very hot day so I was somewhat tired and chesty but we all had a great time, although it was a bit noisy and busy for me as I really wanted a hot bath and a sleep!

The next one is Wills enjoying story time with his new friends at the picnic yesterday.

The girls also made new friends but I hardly saw them as they were too busy enjoying the playground we were in!

A few weeks ago, Wills, Paul and I went to the special "twighlight opening" of Marwell Zoo with, organised by the hospice. Hope and Ellie were away so, once again, absent from the pics. William enjoyed saying hello to the giraffes, cuddling all the furry animals wondering around to meet and greet the children and, best of all, a ride on the minature steam train! We are going to see the real Thomas and friends in a few weeks. I think he will burst!

Meanwhile, Hope and Ellie are Joseph mad. We are SO happy Lee won the role. We are huge Lee fans. I bought some tickets for them as they really deserve a special treat and a really special day with Mum! That made it all the more exciting for us and we were on the edge of our seats. We screamed when we heard. I'm glad I took the gamble as it is sold out today! The girls have been listening to the music all day and have been on all the relevant websites. Even William is singing along to "Jacob and Sons" and "Colours" (as he calls it). We aren't going until July 26th so the CD is going to get a good few plays I think!

Sorry!!!

I am so sorry it has been such a long time since I last blogged (thanks to Charlie for texting me today to give me a kick up the backside!)

All is well. We have just been so so busy. William has been well over the last few weeks. There are some problems (as usual!), mainly with the amount of pain he is in due to the compression and fluid build up he has in his intestines at the moment. We are trying suppositries and medication at the moment but there will be further discussions in a couple of weeks as to whether or not he should have the illeostomy. William's consultants are waiting for some advice from the Birmingham team on this one.

Meanwhile, William's hair has gone for analysis to see if he has a very rare (so rare there really is literally only a handful of known cases worldwide) genetic condition called "trico-hepatic-enteric syndrome". William's case for statement for special educational needs is heard next week so there have been loads of appointments over the last few weeks so everyone can update their reports. As William is currently well, we have been able to judge his progress, as sometimes it is hard to tell if deterioration and symptoms are just due to him being so unwell. Cognitively, William is doing really well and developing every day. His physical development is not going so well. He had a detailed seating assessment this week with his wheelchair assessor and occupational therapist. His muscle tone and reflexes have deteriorated throughout his body but particularly in his pelvis and trunk. This really is William's problem area (of course his bladder that he seems to lack control of, stomach and intestines are in this area too). He presents a huge problem as he can function well, he is a fiesty, determined and independent little soul but he really can't sit very well without a lot of support. His spine is now bending in a curve and to one side and, if this is not supported, it will soon fuse. So, after much discussion, it was decided that William should have a powered wheelchair to use when he is on his TPN (which is probably going to have to increase to 20 hours a day) and when he gets too tired and wobbly to walk with his walker. This way, he can have independence and be fully supported while doing so. He is not a usual case (when is he ever!) so we just need to find out if Croydon will fund this. If not, we will be helped to acquire the chair from one of the charities that exist to purchase these chairs for children. A 3 year old driving a powered vehicle is an amusing thought. I hope they can go very very slowly!! We were at a park today and his walker was very much envied by many of the children so I'm sure his "magic charlie chair" will be even more so!

We had a lovely day today, having a picnic with fellow "Fetchies" from the running website I am a member of. It was so lovely to meet people that I chat to online so frequently. I am really looking forward to catching up with others of you again at the Hydro Active in September, although I hope I get the chance to see people before then too! William has been home for a good few weeks now and it is great to think about making plans. Of course, the bubble could burst at any moment, especially as we are about to do some tests to look at his fluid balance and blood sugar levels at home in the next week or so, and there is the whole illeostomy issue.

Hope and Ellie are great too. At the moment, they are resting in bed before coming down to watch the final sing off in "Any Dream Will Do" and, hopefully, watch Lee become Joseph. There is much excitement among the Milne girls about him and Ellie even sent him a lovely good luck card! Hope is preparing for her own show at the moment. She is the narrator in their Year 6 show, "The Rocky Monster Show" She has a lot to do so is very excited about it.

Well, I hope that has updated everyone a bit. I am sorry it has not all been in more detail as things have been happening. I will post more frequently! The main thing has been trying to catch up with work while William is well and my mind is not so preoccupied with him. I have loads of pictures to share with you too and will download and upload them for you tomorrow so do come and have a look.

Catch-up time again

It has been a hectic week, hence the lack of blogging. I have also put very few pictures up lately so here are a few taken over the last few weeks. I still have not had a chance to get my own laptop fixed and am using my work one. I couldn't rotate pictures today (no software on this) so these are just a selection. They were taken at the hospice a few weeks ago and the cold, damp ones are William and Ellie while we were marshalling and watching Hope at the Race for Life. Hope's picture is not up as it needs rotating. Ellie and Wills had a great time playing with cow parsley (making me sneeze). Some of the hospice pictures show one of William's recent discoveries, preparing his meals on a play kitchen and then sitting down with us to "eat". He loves to take part, in the same way a boy likes a steering wheel at the back of a car. If you give him real food to play with, he recoils away from it but really loves playing with pretend food. It is a nice way for him to join in at family meal times.

Well, the last blog followed our flood and William's tube coming out. William's new tube was put in today. We did go in for it on Friday but an emergency took up the staff and the room so we went home without it. It was a very unpleasant and frightening experience for Wills. He had to lie on a table in a room a bit like an operating theatre with a live feed X-ray machine just inches above his tummy. There were about 6 people with gowns and lead aprons around him, passing equipment etc. The procedure itself took about an hour and all the time he had to lie really still while guide wires and tubes were passed through his stomach into the opening of the small bowel below. Grant, the gastro nurse specialist, and I tried to keep him happy with Thomas stories and music on Grant's phone. When it all got a bit much, I promised him a choice of new engine as I felt he deserved a treat for being so good and brave. He asked for Edward and we talked about the games he could play with him when he got home. This procedure should have been done under sedation but oral sedation doesn't work for Wills as he can't absorb it and they would rather only use general anaesthetic where it is really necessary as it causes chest infections for Wills. William is very forgiving though and soon forgets what he has been through (but certainly did not forget the promised Edward and carried it home proudly).

Yesterday, we had a multidisciplinary meeting where all William's therapists and nurses etc, and I, met to talk about what we are all doing with him and what the goals for the next 6 months will be. It was good for everyone to meet each other. So many people are involved in Wills now. Of course, there are lots of things to sort over the next 6 months. Nutrition needs reviewing as William has not grown much and lacks energy. We are going to do 48 hours of fluid balance charts and blood glucose checks in a couple of weeks to see if he needs more calories, fluid or even longer on TPN during the day to maintain his energy and fluid levels. He only gets 6 hours off the drip as it is so I hope he doesn't need to stay on longer. We will see. The other priority for the next few weeks is to stabalise his posture more, so he needs a new, more supportive seating system and wheelchair. He will also get foot and ankle splints. When he starts school and needs finer motor control, he will also get hand splints for fine work as his fingers are hyperflexible and bend back.

Meanwhile, Hope and Ellie are well and happy. Hope got back from Guide camp in time for a week of SATS, which she said she enjoyed! They held auditions for the end of year production, something Hope is very excited about. Now, she is off on school journey for a week and then off to Dads and Granny (Dad's mum) next week, with Ellie as well. A very busy time for her. Ellie is like a fish out of water this week. Honestly, they fight like cat and dog and then she wonders around like a lost puppy when Hope is away, saying all the time how much she misses her. Talk about can't live with and can't live without!

It never rains but it pours...or gushes...

We have had a CHAOTIC day, starting last night. I was washing up and about to go to bed nice and early so I can get up for my run. I heard some water tricking and opened the cupboard below to find quite a steady trickle from the pipe. Next, a river and, within 30 minute an utter torrent. The noise was really quite alarming! I couldn't find the stop cock (still can't find it!) Water was gushing into the house and I had to wait 2 hours for a 24 hour plumber. Paul was out and it was a total disaster. Then, the electrics went, doubtlessly due to a very soggy mains wire under the kitchen. William is dependent on his pump and nebulisers and his TPN has to be kept in the fridge. Paul came home and took the TPN to the hospital to get it in a fridge and the electician arrived and switched the water off at the street. The sound of quiet has never been so welcome, even if it did cost me £140!!!

Luckily, we managed to get the electric back on.The cause of the problem was simply a join in the pipe that had come loose and, under the pressure of the leak, popped off.

I eventually got to bed at 2 Neither of us heard the morning alarms so it was one of those run around chasing your tail, getting later and later mornings. I was relieved William's respite nurse was coming so I could leave some of his care to her but she was also having a shocker (and continued to do so as you will see) so arrived late. Hope walked to school alone but Ellie and I were late.

William, the respite nurse and I arrived at the hospital for his blood transfusion. All progressed fine so I left them to it, explaining to her exactly how to get home. She has been coming to William almost every week for a year now so is well known to us all so I felt confident leaving him. I needed to sort out the insurance (of course, the floor is knackered, and one of the kitchen cupboards) and finish washing and tidying the cupboard contents.

It was all sorted with just over an hour to go before needing to pick up the girls so I set off on my favourite run for the time frame, looking forward to getting off the road and over the Addington Hills (despite the rain). I had only gone about a mile and still in Central Croydon when the phone rang and it was the hospital

William has a gastro-jejenal tube. This has two ports, one that sits in his stomach to drain away the nasty acidic bile that collects there as his stomach empties very slowly, and another port in his jejenum to enable drugs to be delivered there as they irritate his tummy. This is held in place by a balloon on the inside of the stomach. William had been on a bed (he usually sleeps in a cot) and had looked like falling and, in preventing him from doing so, this tube had been torn out, balloon still fully inflated! I stopped my run to make numerous calls to sort this out, as I still had to collect the girls so could not do it myself. Among the bag of emergency kit we carry with Wills, is a normal gastrostomy to insert if the tube should come out as the stoma can close. I explained to the staff how to do this.

After I had sorted things out (or so I thought) I had 30 minues before the girls needed picking up so I decided to do a 5K tempo run. I really needed to burn off some adrenaline as I was pretty cross this had happened as we are so so careful of William's tubes. Without really trying, I ran much faster than usual and smashed my current 5K PB (which was my first ever run so pretty out of date) by 7 minutes at 23:53! I could be a safe bet for the Hydro Active. I hope I can do this time when not so pumped up and stressed as I am hoping for a sub 25 mins.

Things were not so settled at the hospital though and I received a series of calls, on the way home from school, about the tube not draining and X-rays confirming its place etc etc. I was confused as it is a simple thing to insert the basic tube. I suggested I should come up and sort things out but was reassured all was OK and they would be on their way home soon. I stayed home as I didn't want to pass them on route. Unfortunately, all William's gastro specialists are at a conference this week so I can't arrange for things to be properly sorted until next week, when Wills will need a small operation to insert the new gastro-jej tube. I sat at home, desperate to scoop him up, give him a cuddle and make sure all was OK as it had been a rather traumatic pull on the tube.

After a while of wondering why it was taking so long for the 30 minute bus journey, I got a call from his respite nurse to say they were lost! The reception was dreadful and I had no idea where she was and how they could have got there! It was really worrying. I thought about poor Madeline's family as, all I was going through was not knowing where abouts in my own town William was with someone I know but I was still so so worried. It got a bit on top of me I must admit. Wills is so vulnerable and I felt I should have been there with him to prevent these things happening. It could have been so much worse too. The truth is though, I need these respite breaks and a blood transfusion is a routine, regular event for Wills so it wasn't wrong of me to leave him in the care of a nurse he knows well while it took place. Eventually, they got home (2 hours later) wet and cold. The poor girl had a nightmare shift with Wills and was very upset about everything that had happened. I checked his tube and saw the problem immediately. It was WAY to short, the consultant who insterted it had threaded it below the stomach, into the jej. Hence the X-ray. He was in agony. This tube is not designed for this and was not being held in place properly. I reinserted it and, low and behold, loads of gas and aspirate poured out! Once again, I thought that I really should be there 24/7 as it seemed several nurses, a registrar and a consultant did not understand the specialist issues in William's care and treatment.

It took me ages to get the poor thing settled and the girls' moods escalated in reflection! A nice family meal with them and all is now calm. My wine bottle is open and my remaining Easter egg by my side with a "Lost" DVD and a novel. The remaining untidyness can stay remaining until tomorrow!

No clear answers from Birmingham

Home is once again full after a weekend away. Hope has been on guide camp while the rest of us spent the weekend at the hospice. Very welcome following Paul and I travelling to Birmingham for a discussion with the small bowel transplant team on Friday.

I was hoping, as ever, that the trip to Birmingham would bring about instant answers regarding William's condition and treatment. However, as usual with our Wills, the discussion threw up more questions than answers although, overall, we felt the possibility of William receiving a transplant is not too likely. William is not yet critical enough for a transplant. He has at least 2 sites left for his hickman line (although how long these sites last have varied between 10 days and 8 months so this is not good indication of his prognosis) and his liver seems to be behaving itself at the moment. However, William will become critical at some time in his childhood and the idea that a transplant could be his lifeline when this occurs is a great comfort. This situation could arise this year, it could be next, or it could be a few more years down the line but it will happen. As well as intestinal failure, Wills also has physical disabilities that appear to be progressive, recurrent severe lung infections and odd blibs in his immune responses. This is all believed to be due to one underlying condition, probably genetic. We listened to lots of information about small bowel transplants and, towards the end of this, were told that the 2 main situations in which they will not consider transplant is where there is a progressive neurological condition and where there is a disease that is impacting the immune system. This is due to the enormity of the operation and the future impact of anti-rejection drugs. Everyone in the room knew that both of these contra-indications could well rule William out of the option of transplant. So, the next couple of months will see further tests and collation of results to try and decide if William does have the kind of progressive condition that will rule him out of transplant. These results will be shared with the Birmingham team who will, in turn, meet to decide whether he should be assessed for transplant, assessed at alater date when his condition becomes critical or seen as unsuitable for transplant and his care viewed as purely pallitative, enabling any medical or surgical intervention to make him more comfortable to take place. Even if he is seen as suitable for transplant this can not be seen as a magic bullet. It is a horrible operation followed by several months on a medical rollercoaster. Only 55-60% of children who have received a small bowel transplant are alive 5 years after their operation. Lots to think about and some nervous months to come as we wait for the results that will tell us what can be done. Paul and I hope it becomes clear cut it is either ideal for Wills or not possible. It would be a very hard decision to make not.

I was grateful to have the hospice staff to chew all this over with through the weekend. It was an interesting weekend at the hospice. There was a lovely family there who have just lost their son and were receiving bereavement support while he was resting on the "special bedroom" or mistral room. They have a daughter the same age as Ellie and they were inseperable. This did both girls a heap of good and Ellie spoke to me for the first time ever about "when William dies..." This had been something far to frightening for her to think about but seeing another family go through this has shown her that, although very very sad and difficult, she will still be able to play and laugh and make new friends and none of us will change who we are and what we do. We will just be very sad and will always miss Wills. It is strange and sad how my perspective has changed. This was a really important time for Ellie.

A big week ahead

The excitement of the London Marathon has not yet died down on this house hold. I have it on DVD and am still working my way through, remembering how fantastic a day it was. It feels a bit like a dream now and I have to look at my medal to remind myself I really did it! I was rubbish at sport at school and have grown up with very severe asthma so running really wasn't for me. I have now found that distance running seems to work very well for me. I still can't sprint and running for a bus makes me cough and wheeze. I think it is because asthma is caused by reactive airways and, once you have coped with the inial couple of miles, coughing and wheezing a bit, you settle into a rhythmn that is no longer something new for your lungs to react to. I just hope the summer and its heat and hayfever don't muck up this equilibrium because I have found now that I really need this way of burning up the stress and adrenaline associated with our journey with William. I need to keep this up so have entered another marathon, Loch Ness in October. I won't be able to raise anything like the amount I raised for CHASE at London but will try to raise a little bit more with a competition, together with a suitably Scottish prize, to guess my time at Loch Ness. More about that later in the year so watch this space.

I am really going to need my running this week as we have a huge one ahead of us. William is having his MRI scan of his brain on Thursday. This has been cancelled 3 times because he has been too poorly so we hope he keeps well over the next few days. This scan is to see if there are any obvious abnormalities in his brain to be causing his neurological problems. He is also having his veins scanned to see how many can still be used for future Hickman Lines. The surgeons are concerned because his chest veins are dilated and may not be suitable for further line access. Running out of places for his lines would be very serious indeed. As I have mentioned before, it is likely that William's only hope to lose his dependence on TPN is a small bowel transplant. We don't know if he is suitable for this and have been waiting to explore his suitability with the transplant team at Birmingham Children's Hospital. The idea of a transplant was first mentioned to us just before Christmas 2005. The team were made aware of him at that point. William has had a tough year this year and it was decided to formally refer him for transplant assessment in February, before going forward with the surgical intervention he needs to make him more comfortable. Wills has struggled with pain and discomfort and waiting for this opinion has seemed like an eternity. The news came last week that we are due to meet the team and discuss William on Friday this week - not much notice! The transplant team have had a meeting about him and this is the first stage of assessment. Paul and I will go alone this time and discuss William, meet the liason nurse and other members of the team and have a look round "ward 8" where the assessments and transplants take place. We don't know what they will say on Friday. To me, all this sounds a lot to just be told they can't do anything but it may just be a standard letter. Friday is the day we have been waiting for for so long and will be the beginning of the next phase in William's treatment, whatever that may be.

Some pictures to go with the post below

The London Marathon

This was an amazing day so this is a very long post.
In short, I finished it - YAY!! My time was 4:46:59. Pretty good considering the heat. I came 873 out of 1881 women in my class (vet 35) and 4551 out of 10854 in the whole of the women's race. To come in the top half, you would usually need a time of about 4:20 so that goes to show the impact the heat was having on everyone.

Here goes, I advise you have a cuppa in your hand if you want to read it all. Pictures will follow when I get them.

(Oh and if any Fetchies are here - this is the same as on the Fetch blog)

Before the Race

Wow, where to start? What a day! I have been so busy, getting myself and the family ready for the big day that I didn't get around to blogging about the Expo and my last preparations so I will blog today about the day itself and then go back in time and fill in the missing bits. I'm sure I will think of more things to say about this weekend over the next few days in any case as the surreal "marathon lag" begins to clear.

My marathon day started at 5:45 with breakfast of porridge and coffee. On Friday evening, I was asked to do a BBC interview with Jonathon Edwards before the start, so I decided not to take a kit bag as I was worried about getting everything done before the race. As it happened, the interview ran very well to time and I would have had plenty of time. It was one less thing to think about though.

On Saturday, I had felt incredibly nervous, a bit like the feeling when you have reached the top of a rollercoaster and are just about to go. The training had almost been like that slow and steady journey up to the top and then there is that sick butterfly wibbly feeling that it is now too late to get off and you are wondering if you will be OK, at the same time knowing that you will but that, with the exciting moments, will come some sheer terror. On Sunday morning, this fear had given way to excitement.


On arrival at the red start for my interview, I was immediately hit by the scale of event. I have watched it on TV for many years but there is nothing like seeing it for yourself. I was there at 8.00 and there were no loo queues so I popped in before looking for the BBC gantry. As I approached the scaffolding, I could see Jonathon Edwards who was to be interviewing me. With the enormity of the entire day filling me with excitement, I found that I wasn’t at all nervous about the interview – not until the first question anyway! Jonathon was so lovely and seemed to genuinely care about the story he was being told during our chat before we started. We did the interview and then I was called back as it had “broken up”. This was great as it meant I got a rehearsal! I haven’t seen the program yet but, from reading Fetch threads, it looks like the interview was seen only by the editors but our club photographer was there to show that it really did happen. In any case, it was great to start my marathon with a chat with a sporting hero I really admire and to be wished well by him.

After the interview, I made my way to the green start and, between queuing several times for the loo, had plenty of time for a little celebrity spotting. I must confess, I didn’t recognize everyone with the red stripes through their numbers but did see Evan Davis, Nel ? – the model, the two blondes from Eastenders and Adam Hollioakes who was running with his Dad and members of the Surrey Cricket Club in full cricket whites for a special Fund set up for CHASE in memory of his brother. I saw them a few times through the course and, with the CHASE connection, was able to start a conversation.

I met up with some of the GFA runners from out club and, before long, it was time to line up.

The First Five Miles

I have to confess, I started too fast and have learned my lesson! The green start gets off pretty well and you can hit race pace (or above) within minutes. I did notice my Garmin reading 8 minute miles at one point and kept trying to slow down but was running at 9-9:30 a lot of the time at the start. I was under my targets at each mile marker for quite some time and did get some hopeful notions that, perhaps, the heat was good for me and this was going to be a great run.

The atmosphere was fantastic. The start took us along residential streets where families stood on the pavements eating toast and sipping coffee. Then we passed churches and other religious buildings where congregations were singing and playing. It was such a fantastic window into the Sunday morning lives of residential London. Further along, we passed the first of many pubs offering a party atmosphere with music and dancing. I think I heard 100 miles by The Proclaimers about 4 times along the course. As we approached the 3 mile mark and merge with the blue start, we played Oggy Oggy Oggy. Everyone was in great spirits.

The merge was fun with much friendly ribbing and booing. I think I crossed over at the right time! I had my first water at 3 miles and my nutrition/hydration plan came into action. Water every 2 miles, gels at 8, 12, 16 and 20 and an ample bag of jelly babies in my pack. The mile markers came fast at first but, oh, how far away they felt later on.

5-15 Miles

Coming into Greenwich was exciting as it is the first of the views that seemed familiar from watching it on TV. It is a shame that we didn’t see The Cutty Sark but the BBC cameras were there up on the crane so everyone was excited and waving up at it.

From about 8 miles, I began to look forward to seeing my family, somewhere near London Bridge Station between 12 and 13 miles.

Tower Bridge was amazing, what an atmosphere! I work part-time (though at home most of the time) for BLISS, the premature baby charity. Some of my colleagues were on the bridge under a big yellow balloon arch. I spotted them and waved and heard a huge cheer. I felt great, until I saw two BLISS runners just behind me and everyone looking at them, no-one at me! Oh well, it is hard to spot a runner in the pack. Unfortunately, this proved only too true. My family were also on the bridge and I didn’t see them and they didn’t see me either. I thought they may have gone on a little further so kept on looking. I was encouraged by the strangers calling out my name and offering goodies. Those orange quarters were amazing and will be top of my list for supporters in future marathon (yes, I am saying future and I knew I’d do this again as soon as I finished)

I was still feeling good and still on target, although no longer with minutes to spare.

15-19

By 15 miles, it was clear that I had missed my family. I felt really down about this and sad when I say banners for “Mummy” that I hadn’t seen those my own children had made. At this point, the race began to get harder and I began to feel the heat. Every St Johns Ambulance point seemed to have an unconscious runner on oxygen and I passed a guy on the road, surrounded by about 5 first aiders, begging them to help him. This began to frighten me a bit, especially as I did feel the odd wave of nausea and, at one time, even began to feel a bit cold and shivery. I made sure I was drinking enough and poured the end of bottles on my head. It took a couple of times for me to realize my cap was water resistant and to remove it before doing this and running through the showers. The showers were heaven and these, and throwing water on myself, made me think of water fights in the summer. That refreshment that follows the initial shock you get when the cold water hits you. Fantastic! I was beginning to fall behind my 4:30 schedule but, with so many people collapsing and stopping for other treatments, I decided to focus on just getting back in one piece.

By mile 18, I began to feel a little disorientated and loose track of when I had last had water and what my race plan was. I was also worrying about my family and wondering if they had made it to London. I began to focus on getting Fetch Central and mile 22 and counted down the miles before I would be there. It was at this point that I decided to walk through water stations to cool down and take a short break. Miles 19-21 were really hard and I did have to take a couple of short walking breaks, just for a couple of hundred yards or so. I saw more and more casualties and was beginning to feel very emotional. My worries about my family got bigger and, eventually, I decided to call them. Paul was struggling with reception due to the crowds and so the phone seemed switched off. I left a message but, after a while, had convinced myself that they had had to take William to hospital and I was stuck miles from the finish, not knowing what was going on. I even considered leaving the race to find them. I lost it then and had tears streaming down my face. I thought about all the people who were behind me and had sponsored me and I had to finish. At mile 21, I started looking out for Fetch Central. I was convinced I had missed it before seeing the countdown banners. They were a fantastic sight, not much less so than the countdown to the finish line. A had always told myself that, from there, it was my short training loop home. Knowing I was now approaching so many people that had encouraged me so much on the Fetch website added to my emotions. I felt so invigorated as I approached and had regained my stride. I waved, but didn’t stop. I think if I had stopped for some hugs, or even a high five or two, I would have been totally overcome by emotion and blubbed about my fears that Wills may not be OK. I got a glimpse of everyone and can still remember the faces I saw. I really needed that cheer and the sound of it, together with such happy faces, carried me to the end. Thanks SO much guys!!! You may have felt I didn’t need you too much as I ran straight past but, oh boy, I did and I ran away from you with more tears in my eyes.

The Blackfriars underpass followed soon after and I felt very weird in there. I think it was the lighting, but I felt sick and dizzy and almost a bit panicky. I didn’t know whether to run fast to get out of it or walk. I opted for a combination of the two. I soon felt better when I got out and soon saw mile 25. I completely forgot to look out for my running club here as I was so focused on getting to the end. The atmosphere was great and people called my name whenever I took the odd walk break. This so encouraged me and, in the end, I found the strength to run to the end. The last stretch was fantastic. I felt strong again and the sites and emotions were amazing. Suddenly, the countdown banners were there and then the finish line. I was amazed to hear the tannoy congratulate us and announce that we were in the top half. I had taken so many walk breaks, albeit very short ones, and couldn’t believe that over half the field were behind me.

My chip was taken off and I was given my medal. I am used to taking it at races so I tried to take it off the lovely lady who was trying to present it to me. I was still worried about William as I still could not get hold of Paul. I tried to put this to the back of my mind as I posed for my photo. The time it took to walk to Horse Guards was awful as I just wanted to see if they were there. My legs were really hurting too. Eventually, I got there and felt almost claustrophobic in the huge crowd. I could see the CHASE banners among the mass of people, balloons and flags and made my way over. Then I hear Paul calling me and physically felt a wave of relief come over me. The tears came back and the whole family had a hug as we walked to the stand. They took my photo and I wanted everyone on it, much to William’s disgruntlement. I was presented with a glass of champagne which I sipped along side my recovery drink. I was in the first half back for CHASE out of 40 and this, together with the announcement at the finish line, made me realize that, in the conditions, I had done better than I thought. I wondered about all those I had seen in trouble and hoped they were OK. We chatted to people at the stand for a while and headed to the pub where I said a quick hello before leaving to go home.

Difficult discussions

Today was a real down to earth with a bump day from the excitment of the FLM. I took William to see his local paediatrician this afternoon. These appointments are more about me telling him what I am concerned about and asking him of his ideas about William in general. The specialist consultants sort out the specifics of his treatment. I was hoping to get to the bottom of what is causing abnormal patches on William's chest x-ray but got the usual, no-one really knows, kind of response. I told him I am concerned about the fact that William has less energy than usual these days. It may just be that he has had so many infections lately or it may be that there is some chronic infection that we have not yet identified. The difficult thing is that it may be that the degenerative aspect of William's syndrome progresses more quickly when he is unwell. Unfortunately, this is most likely as his examination showed that his reflexes are less brisk and his foot deformities and associated high tone in his tendons have worsened.

Everyone is waiting on his bowel transplant assessment. He can't go on getting poorly with infections if this is causing general deterioration. There is also a very real danger of running out of sites for his hickman line if he carries on getting so many line infections. I hope that they will accept him for transplant and that, perhaps, he may even go on the list straight away as, although his liver is OK at the moment, his lungs are being damaged by the bugs in his gut and there is a very real threat to his long term feeding if we run out of line sites. After the appointment, I had a meeting with William's community nurse and a nurse from the hospice to discuss what we want for his end of life care, should this be needed. We all hope this won't be for a very long time but plans need to be made while we are thinking straight. It all needs to be right and it is the last thing we would be able to do for him. In many ways, we are lucky because we know that there is a chance William will die in childhood. We can make plans to ensure, if this happens, it happens in the best possible way for William and the family. We now have a plan about getting William to the hospice if we reach an end of life situation. Once there, they would help and guide us through everything and we can stay there as a family until it is time to say a final goodbye. I know Hope and Ellie read this blog so will stress again, there is no reason to think this plan is needed in the near future. It is just in case. William is on good form at the moment and has just finished his latest course of IV antibiotics. Fingers crossed, he will stay well for a good long time now.

School holiday fun

I am happy to start this blog entry with lots of happy photos of family days out in the Easter holidays. We went to Godstone farm on Monday where all 3 children had a lovely time. We had a picnic there and William joined in with his wooden food. He won't touch real food but loves to join in and pretend. William still loves the sheep best of all the farm animals. On the way home, we popped up to the view point at the top od Addington Hill. This is on my favourite running route but, as you can imagine, it is a tough run getting to the top. The views are well worth it though. It didn't feel as rewarding getting there by car but that is the only way Paul will see it in the foreseeable future!

Unfortunately, Paul did not enjoy the day quite so much as he managed to break his hand karate chopping the sofa in a moment of rage on Monday morning! This is a bit of a nightmare as he can not do any TPN or IV drugs because a hand in bandages and plaster is not really condusive to sterile procedures! This is particularly difficult with the London Marathon fast approaching. We were relying on Paul flushing William off his TPN - I may have to run a little faster! Luckily, the head of clinical services for the Hospice will be on the CHASE stand at the end so, with a bit of alteration of the timings William goes up and down from his TPN, she will be able to flush him.

Today, we went to the London Aquarium with our CHASE community nursery nurse. We had a great time and William enjoyed the fish, epecially "Nemo". All 3 children had a lovely day, although Wills was somewhat tired following another exciting day yesterday when he re-discovered the rolater we have been tying to get him to use. He has had it a few months but never really wanted to use it for long. Suddenly, he has found how much steady he feels using it and loves it. He took it all around our local park with Joldin, our respite nurse, yesterday. No wonder he spent all day cuddling into "magic blankie" and wanting to be either in "Charlie Chair" or being carried. It is a feature of William at the moment that we get good days and bad days. it would be nice to see a longer string of good days.

Yesterday was an exciting day for Hope and Ellie as well. We joined the ques of hundreds of young girls and teenagers snaking around the Whitgift Centre in Croydon to have their books signed by Jacqueline Wilson. It was well worth the wait. The crowds meant that each child only had a few seconds while their book was signed but it was so exciting for them. Hope told her how she is writing her own autobiographical book about growing up with William and Mum in and out of hospital. She had a special message written in her copy of Jacqueline Wilson's childhood autobiography, Jackie Daydream, wishing Hope well with her book.

Happy Easter (and a fortnight to go...)

Happy Easter everyone!!!

It has been a busy few days. We have had teething problems with the new TPN pump and some hitches with the bloods we have been taking for William's IV antibiotic levels. Things go wrong with equipment and procedures all the time, take my computer and recent death of my mobile phone for example. These things cause us huge problems, we loose people's phone numbers and, until my computer is fixed, I have no access to all my photos and most of my music collection. Medical equipment is a different thing alltogether and causes us HUGE amounts of stress when it goes wrong. It always seems to at holiday times too. It was Christmas when William's hickman line split. The pump teething problems are difficult, not least because those who would normally be our support system in such matters are not yet fully used to the pump so are none the wiser about the problems we are having than we are. The pump is fine, it is the giving sets that tend to leak or occlude... Yesterday we had to start again with the old (and now illicit) one but today, so far so good. It took us 3 attempts to get William's blood test right though. First we used the wrong bottle, next time the sample clotted and the ward told me to throw it away. We were later told by the doctor that the blood cells were meant to clot, leaving the serum in which the drug levels are tested. It was a special bottle and a special test. I think people can assume we know everything because we do so much for William at home. We are still on a steep learning curve though and this antibiotic (amikacin) is not one we have used at home before. Well, we know now so that is one further step up the curve.

Despite all this, we managed to have a lovely family Easter. The girls enjoyed the Easter egg hunt after church. The Sunday School leader had thoughtfully bought William a magnetic scripture verse for his wheelchair as he can't eat the chocolate. In place of eggs at home,among other gifts, William was pleased as punch to get Thomas, Percy and James T-shirts and a Henry to add to his engine collection. He is OK at the moment but very pale and tired. He is really lacking energy to play for more than short periods before needing a cuddle with his "blankie" to re-charge. We plan a day at the farm tomorrow so hope the fresh air will give him a boost.

Today is 2 weeks exactly until the London Marathon. The scary thing is that there is now nothing I can do to get any fitter for the day. I missed a lot of training last week with a bug and, rather annoyingly, the sunny weather has bought hayfever with it for me so my asthmatic lungs are beginnng to ask me what on earth I think I'm doing! Not in a big way though (so Mum, don't worry!!!) more with some irritating little coughs and sratchyness and the need to puff on the inhaler a bit more regularly. It is easy at this stage to find every run, no matter how short, harder than the 20 mile runs done over the last few weeks and, therefore, panic about finishing the marathon. This is normal and termed by some "taper madness". Training tapers down now as there is nothing that can be done to improve fitness and rest and relaxation to muster strength for the day is the priority. I guess, it is like stuffing up your lines on a dress rehearsal and forgetting that you know them like the back of your hand. I have been looking over my training schedules and seeing how far I've come (literally as well as metaphorically!!!) and am confident that, as long as I don't catch any more bugs in the next few weeks) all will go well on April 22nd. I am really looking forward to it. Including some more money raised offline, I have now reached my target of raising £2 000 for CHASE Hospice Care for Children. If you have been following this blog, you will already know how much they do for our family. I hope to raise a bit more over the next few weeks, not least because Paul hasn't sent the plea to his friends yet as he is saving it for the last minute when the marathon is on people's minds. It would be wonderful if I could reach £2 600 and make it £100 per mile - that would be such a good motivator in those last, painful miles.

Home, but stressed

We are home again - only just. After a complicated day of plans and changes to plans, one person happy for us to go and another not... William is sleeping in his own bed, Hope and Ellie are arguing in their bedroom and I am on the sofa with a cup of tea in hand. The house is in rack and ruin around me with bags and piles of stuff bought backwards and forwards from hospitals over the last few months. It seems we are never quite sorted from the previous admission before back in again. I must admit, it is starting to get hard for all of us as we just can't get a decent run of relaxing and enjoying being a family without another panic as William is spiking a temperature again. I am finding our current fragmented existence very difficult and tiring.

William is well in himself but still has resistent pseudomonas bacteria in his intestines and lungs and still some floating about in his line. This is why we nearly didn't make it out of the hospital door. William's IV antibiotics had to be changed and, ideally, he should have a couple of doses to make sure he is not going to react and blood levels done before coming home on them. Luckily, after much discussion and compromise, it was agreed that we can come home with William on a monitor (he will remain on a monitor overnight now as an alarm to indicate increase in heart rate is the only way we would know if he was spiking a new temperature and could be indanger of septic shock ) and us being extra vigilent and his bed being kept open for 24 hours just in case. Sometimes, I can just live with the fact we are staying one more night but, this time, William is fine in himself and we want to be home together for the Easter weekend. Wherease, in the Chelsea and Westminster, we can at least relax and make a drink and some food in a microwave, our local hospital have declared it against health and safety for parents to use a kettle so you can't even make a cup of tea. That makes such a difference and I think my mental health and safety is much more compromised by being denied this basic thing than my physical health and safety could ever be by the tiny risk that I may scald myself.

A further complication to the day has been William's TPN pump. Our pump has been withdrawn and we were given a new one a few weeks ago. Rather worryingly, given the huge infection risks with TPN, the new giving sets leaked so we were told to go back to the old one. The old one was finally withdrawn at the end of March so, since then, would not have been replaced if there was a problem. I must add, its withdrawal has nothing to do with any problems in it's function to deliver TPN. Our TPN company found out we are still using the pump today, even though we were waiting for them to tell us when the problems with the new one were ironed out. We were told to stop using it immediately and that new giving sets with the initial problems resolved would be delivered to us today. These came too late for William's hooking up time so I used the old pump. Our nurse rep from the company phoned with a sigh and silence, followed by, "I just hope nothing goes wrong with it tonight" - why on earth should it when it has been fine for the best part of a year!! I am certainly not in the mood for spending half the night making sure there are no leaks. The rep is coming out at TPN time tomorrow to talk us through the new pump again so, all being well, we will start using it again then.

The reason the new giving sets did not arrive is the same as why poop Paul spent 11 hours on the roads today collecting the girls from Mum and Dad in Stoke. The poor things were stuck in horrendous holiday traffic! Paul had to go straight out again to collect all William's IVs and is only just arriving home now.

Well, I have babbled on enough. I'm sure the mood of Chez Milne and Hopwood is ringing out from the screen. We are all pretty tightly wound right now (well, actually, the children are pretty chilled as Hope and Ellie had a lovely time Mum and Dad's and William gave a content little wiggle when being put into his own bed) Paul and I are pretty tightly wound though but a glass of wine and cuddle on the sofa will soon solve that!!!

Not a good start to the Easter hols

On Wednesday, I was hoping we would just be in the hospital for 24 hours before William was declared fit and well and we were sent home again. Unfortunately, this was not to be and we are, once again, in the only too familiar world of separation. Wills in the hospital and me splitting myself between home and hospital. At least we are still in our local hospital and, up until Friday, I was able to split my time between William and the girls as Paul is home on Easter Vacation. However, this latest stay in the hospital has con-incided with Paul's return to some resemblance of his singing career and he has had 2 gigs this weekend, one taking up a whole day in Nottingham. So, the girls are back with Grandma and Grandad. It is heart breaking to be spending the start of yet another school holiday apart. They will come home later in the week, whatever happens, as with Paul home, we can at least share our time between the girls and William at the hospital and we hope to have him home later in the week. We had hoped he would be home tomorrow but, Wills being Wills, has had his good days and bad days and the consultant informing us that, if cultures are clear and Wills has no more temperature spikes, we could go home on Monday. Needless to say, William did spike today and has had to have a third IV antibiotic added in so we will be in hospital for at least 48 hours longer. He is still "neutrapenic, meaning his neutrophil levels are still very low and he has little immunity to infection. This means strict isolation and he is not allowed out of his room. One upsetting thing is that William's chest is very bad at the moment and, after looking at his X-ray, a doctor came in happily to inform me that it is fine, at the first look she thought it was looking rough but on comparison to an X-ray taken in January, it is the same and the "three patches" are "chronic changes" rather than acute pneumonia. I wasn't really sure this was good news!!!

I am so fed up with our "stop start" family life. With William and Paul's leg it does get too much. I have a lot more to say about this and other things but Paul is waiting to take me out for a meal to chew the cud and cheer me up! So, I will be off now and will blog more when I get the chance.

Back to the hospital again

This is another of those quick posts to let you all know that we are, once again, on our way back to the hospital. Not such a dramatic emergency this time, thankfully. William has had a high temperature all day but has not seemed to poorly in himself. However, I asked for some blood tests to be done to make sure nothing is brewing and, unfortunately, his white cell counts and platelet counts show that his body is struggling with another infection. His inflammation markers are also up and his red count down. We hope this will just be a quick stay and we will soon be home again to enjoy the Easter holidays, even if that does mean home on IV antibiotics. It seems we can never relax with everything stable for too long these days!

Emotional times

We are all settling back down to normality. Not without a few inevitable hick-ups though. Hope is now too old and wise not to know that there are some concerns at the moment and she can't get the image of William lying on the floor so ill out of her mind. It is so difficult because you want to protect the siblings from things that children so young should not have to concern themselves with. That works for Ellie but not for Hope. In some ways, all of this has made he grow up too quickly but, of course, she is a 10 year old child with a 10 year old child's emotional maturity. This results in a great deal of emotional turmoil between things she understands too much about with those she understands so little of. This, with all the things every 10 year old has to worry about, such as going up to secondary school, a growing interest in her self-image, boys and the latest fashion is all a bit too much for Hope at the moment. There have been a few blow ups while we learn how best to move forward and support each other. One of the week's lessons has been that Hope wants to share in all we are feeling about William. I have been accused of not caring enough because I never cry, words said as poor Hope sobbed her heart out because "they want to make another hole in him (the illeostomy) and he is only 2 and a half". I explained to her that, oh yes I do cry - in bed, in the bath, when I am out running. We have made a pact to let each other know how we are feeling and not to hide emotions away anymore so we can support each other.

The girls made some lovely banners and posters for Mothering Sunday and did their very best to make it a special day. They did too, it was a lovely day. My thoughts are always with those Mum's I know who have lost their children. It can be a bitter sweet day, even if you have other children and heart breaking for those who have lost their only child. It is often said that we borrow our children while they are with us, only to let go as they grow in independence. Some of us borrow our precious little ones for a shorter time. As this post no doubt demonstrates, I am still feeling emotional following the last few months, and probably will remain so until we go to Birmingham for our inital appointment towards William's transplant assessment. A good friend of mine has just had a baby and I got a cuddle this morning. She is gorgeous and perfect and, whiles ecstatically happy for them, I still feel a pang for William and the healthy baby he could have been. Not that I would change him though. He is amazing.

Emily (www.pinkandsmiley.blogspot.com) came home today after her lung transplant. I am so happy for her. She deserves her second stab at life so so much. Right now, I hope that William is assessed as being suitable for transplant and he can have a chance to live a life away from drips and tubes. (even it he will always be a bit wobbly).

One practical plea - my mobile phone crashed and burned yesterday and, with it phone numbers of all my friends that I have made in the last 2 years or so. I am using an old phone but have no new numbers If you read this, could you please text me. I would have texted a few of you today to say I was thinking of you - you know who you are and know that you are always in my thoughts xxx

We're back!!!

Hi everyone! We are finally back from hospital and back online! It has been a hard couple of months. Once again, the girls have been away from home at Grandma and Grandads. It was great to have them back again on Friday. It has been a great stress on us all. Although we are home now, which is fantastic, we know that this year will bring further hospital stays. William's health has deteriorated over the winter. Of course, this may just be due a bad winter and he may bounce back. However, it has been decided that now is the time to start thinking about whether or not he may benefit from an intestinal transplant. He has now been referred to Birmingham Children's Hospital for assessment and for advice on the best surgical intervention, such as an illeostomy, to help make him more comfortable in the mean time. William is getting a lot of infections due to the stagment fluid that sits in his intestines. One such infection is pseudomonas aueriginosa, a nasty bug that used to colonise his lungs. Unfortunately, this bug has returned in his intestines, around his gastrostomy and, once again, in his lungs. He is on IV antibiotics at home at the moment and will start antibiotic (colomycin) nebulisers later in the week. We are also having to restart his chest physio. He is back on a lot of the treatment he used to have when his diagnosis was "probably cystic fibrosis" as well as the TPN and IV medications for his intestinal failure. We have calculated that all this will take about 3 hours a day.

With all the extra care, breaks like those we get at the hospice will be even more valued. We were there this weekend (where William enjoyed the swing). The main reason for our stay was to attend the reception for the marathon runners held at the nearby Losely House. It was a fantastic day. The girls had their face painted and enjoyed playing and painting with William. We had a fantastic three course meal and wine (Hope was most cross as she was given sausage, chips and beans with the other children) and many official photos were taken for local newspapers and for team shots etc. It was a really exciting day and the marathon seems so much more real now. I was relieved to share training stories with other first time runners and learn that I am ahead of most in my training mileage. I was asked to share a little about why I am running for CHASE with the other runners. With all that has been going on so far this year, I suddenly felt very emotional looking out to see all those people (54 runners plus familes and CHASE staff) and felt I was talking in a very squeaky voice with a huge lump in my throat. As many people know, I can talk and talk but wasn't able to say an awful lot. Still, one lady did tell me afterwards how moved she was and how she was going to work harder with her fundraising. All the runners will know why children are referred to CHASE and I think seeing William attached to his TPN in his chair during the morning and then running around in his unique wobbly way would have spoken much loader than any of the words I had to say. The CHASE marathon team has been going for 10 years now and are just £7000 away from having raised 1 million pounds. The 2007 team will reach that milestone which is absolutely amazing. I know many people who read this blog have already sponsored me - thank-you so much! If you haven't done so, please do help us reach the magic million pound mark by clicking on the link to the right of this page.

Further delays...

Well, we should have been going home today but, unfortunately, William's new TPN prescription has posed problems in gaining stability in the bag. Each bag of TPN contains all the nutrition, vitamins, minerals and fluid the recipient needs in the day and is a unique presscription to the individual, based on blood test results. With such a complicated mix of chemicals, there can be problems in stability and each bag needs to be stable for 2 weeks to enable storage in the fridge. So, William remains on fluids alongside his TPN, although we are expecting the new prescription to arrive today. They then want to see if his electrolytes balance OK on the new stuff so it will be next week before we are home. We are due in overnight for an MRI scan and to train with new home TPN pumps on Thursday anyway so everyone has agreed it is silly to go home for a couple of days and come back. Another week in hospital with the girls away in Stoke is looming...

It has been a while..

It has been a while since I last posted and Hope and Ellie, still at Grandma and Grandad's, are begging me for an update. We are still in hospital but now have William's electrolytes balanced. He needs some adjustments to his TPN so we this week is a tedious week where he is having additional potassium and sodium in a drip alongside his TPN while new bags are being made up. We should get these on Thursday so can finally go home. It has been a frustrating start to the year, with only 2 weeks at home! 2007 looks set to continue in this fashion as William's consultant and surgeon have agreed that he needs an illeostomy and perhaps other surgery to "decompress his gut", i.e. to drain the fluid and gas away. This is not going to happen immediately as we first need to establish if William is likely to benefit from an intestinal and, perhaps, stomach and liver transplant. So, this week we have finally been referred to the transplant team in Birmingham. William is not yet sick enough for a full transplant assessment as this happens when the liver begins to struggle much more than William's is at the moment. What will first happen is that Paul and I will meet the team and discuss if this route will be right for him at a future date. The outcome of that discussion will determine the type of surgery that will be done later in the year.

I can't wait to get home on Thursday and have some time to normalise! I miss the girls so much but they have been fantastic and very brave. Love you loads xxx

Back to hospital

Just as we were all settling back at home and Mum and Dad are back at their home we were called to say William's potassium levels are low and he needs some different fluids and a blood transfusion as his iron levels and red cell count are also low. So, I am just packing and back to Chelsea and Westminster we go. It is really awful, poor Hope is distraught! These are the worse times in all of this.

We are home!!!

Hooray!! We are finally home. It has been a very long and traumatic month for William. He had his hickman line taken out and, unfortunately, the infections had become so well established that it was 12 days before a new line could be put in with some confidence it would not be immediately infected. During this time, William received fluids via a peripheral cannula. He had 2 long lines (longer cannulas that are supposed to last more long term) and 8 cannulas, each one taking 2 or 3 attempts to get in. The poor thing became absolutely terrified that any stranger who approached him was about to grab his arm or leg and stab him. Eventally, anyone who came anywhere near him was greeted with and anxious "all done...all done". It has been most upsetting to witness. Wills also became very ill again last week and no one was sure why he was so poorly and where the infection could be centered. He very nearly ended up in the High dependency unit. Eventually, it was felt that a chest infection was the main problem and he was put on a combination of IV antibiotics for pseudomonas in the lungs, escaped from the intestines! This worked well and the new hickman line was finally inserted on Monday.

We are now waiting for the next phase. Wills is losing about half a litre of nasty liquid from his stomach, via his gastrostomy. This is due to liquid failing to drain from the colon and backing up into his stomach. This is making him feel very nauseous and the gas from the festering liquid is causing a lot of pain. An x-ray showed that there is a lot of liquid and gas building up, so much so that his small intestines can become as big as the large ones and press on other organs, such as the liver. This build up is what is causing all these infections in his line and chest as the bugs build up and get into the blood. His consultant is away this week and we are going to see him in clinic next week to discuss what to do next. It is highly likely he will have an illeostomy to enable the liquid to drain higher and for his intestines to de-compress. This is so probable that we have had the talk from the stoma nurse and have lots of literature and some sample illeostomy bags to look at and, once the decision is made, familiarise William with. I was hoping they could have got on and done it while he was in but they want him to be fully over the infection and better nourished for a few weeks first. He has missed out on so much TPN over the last month and has lost 1.5 kilos - a lot to loose when you only weighed 13kg in the first place.

Wills had a very happy day today and was delighted to be home. He beamed and beamed in the car when we travelled home yesterday evening. The girls were really pleased to see him too.

A new blogger

William's big sister, Hope, has now started a blog so you can follow her perpective on our life. He address is www.hopemilne.blogspot.com. Do go and visit her blog and say hello.

Still no new line...

I have managed to escapte into Starbucks for an hour or so while William is with out community team member from CHASE. I really need to get some work done so this is just another quick update. William's line came out on Thursday but we have still been unable to put a new one in as he is still very poorly with infection. They feel the infection is coming from his intestines and is "systematic" meaning throughout his body, rather than just simply a "line infection". The fact that the line is out and he is still poorly does support this. We are hoping to get the line in tomorrow or Friday as he has had very little nutrition over the last month and is looking rather pale and skinny. It has turned into a lot longer haul than we thought and poor Hope and Ellie are getting upset with yet another period of being apart from Mummy and Mummy is feeling exactly the same way! It is all very wearing but can't be helped. We all hope the new line is in as soon as possible and Wills can come home so we can all settle down again!

Another quick update

This is just another very quick entry as I am home very briefly for tea and to collect William's TPN. I am keepnig diaries at the moment so will post a reflection on the last few weeks when we are home and back to normal.
William had his infected line out on Thursday and has spent the weekend with no Hickman Line at all, surviving on fluids (and IV antibiotics and antifungal treatments) only through a cannula in his hand. His infections were too bad for a new line to be inserted straight away. We are hoping to get the new one in tomorrow so he can go back onto TPN. We really hope so as it has taken at least 3 attempts to get cannulas into him as his veins are so scared from all the IVs he had before his port-a-cath and Hickman Lines. Once the line is in, we will move onto thinking about how we are going to keep the infections in his guts under control. This will probably involve antibiotics but, as I said before, this could cause more problems as the drugs would just sit there. William's gastric aspirate (that drains from his gastrostomy) is really yukky and and there is more of it than ever so there is a chance we will have to discuss the possibility of an illeostomy (a piece of intestine through the skin to enable the waste stitting in his gut) to drain out. William's consultant is covering the ward this week so we'll see what he thinks. Something needs to be done though as the poor thing is looking so pale and "bilious" with all this sitting in his stomach.

Some pictures to brighten the blog

I have been accused by Paul for making this blog too boring due to the lack of photos on recent updates so here are a few pictures, from the mobile phone, of William over the last few days. As you can see, there are good days and bad days but the brighter pictures are the most recent ones!!!

Battles with the old enemy...

We are still in hospital, battling with our enemy of old - the dreaded pseudomonas! When Wills had a CF diagnosis, this bug was ever present in large numbers in his lungs, causing a lot of worry about his prognosis. When he had his Nissen Fundoplication, to prevent reflux and his gastrostomy inserted to allow us to drain his gastric aspirate, we learned that the pseudomonas in his lungs were coming from his intestines and getting into his lungs in the reflux. Now, it seems his intestines are far more colonised with pseudomonas than previously and the little blighters are crossing the gut membrane into his blood, causing line infections and septacemia. He has had 4 different species of the bug in his line during the last few weeks. His guts also seem to be colonised with fungal infections that are also getting into his line. This is all more than slightly worrying. He is going to Chelsea and Westminster hospital on Monday to see if he needs a new line and also what can be done to keep these bugs at a safe level - they are unlikely to be killed now, as one doctor put it, once you are colonised, they are yours! When gut motility is slow, these bugs just sit there breeding. Most people would be able pass any such bugs quickly through the system without giving them time to breed. The standard way of "sterilising the gut" is to put large doses of antibiotic in daily for 3 weeks, then off for 3 weeks so on... This would be OK for a child with slow gut motility. However, William has no motility to speak of so the antibiotics would sit there, causing problems in their own right. So, as well as deciding about the fate of his line, next week will see discussions about what we can do about this. William's gastric aspirate has been getting muckier and muckier and more and more in volume. His stool output has gone down, suggesting the yucky secretions are sitting around longer. It could be that this is the beginning of another step closer to Wills needing an illiostomy. So, we are off for a review and some more discussions of "what next?"

Still full of infection...

Well, we are still in hospital and, although William is much better, he is far from well. He still has bugs in his line and also has a fungal infection in there. He has started a daily 4 hour infusion to combat the fungus but it looks like he will remain in hospital this week and may have to go into Chelsea and Westminster on Monday. Paul is also in hospital this week for the next operation on his leg. I can't wait to get back to normal!

A quick update

This is just a very quick update while I am home swapping dirty for clean vests. William is still in hospital and has been pretty poorly. There was even some thought as to whether he should have been moved to a high dependency unit on Wednesday because he really was a poorly little thing. His temperature had shot up to 40 and the markers in his blood that show infammation, due to infection, were very high. Poor Wills was just lying down, hardly responding to anything at all. All the nurses that know him well, know that this is certainly not William! He is now much better, having responded to the IV antibiotics. However, the poor thing has managed to catch 4 infections, two in his line and two in his stomach, turning his gastric aspirate thick, green and very smelly!! For those reading this who know about bugs, he has pseudomonas flourescens and staphloccus epidermis in his line and pseudomonas aueriginosa and candida in his tummy. We are trying to treat all that with as few antibiotics as possible but there are some more up our sleeves if he needs them.

Another line infection

Well, we are back in hospital again with another line infection. This was another hairy one. William was playing happily with his Thomas the tank engines and, all of a sudden, was found lying on the floor all pale and drousy. The ambulance came quickly and, as he was looking so awful, ended up blue lighting him. He was going into peripheral shut down again, when all the blood is sent to the vital organs, a sign of going into shock. He is still very hot and poorly today but has some colour back in his cheeks. We were very pleased to hear him ask for his favourite Thomas episodes again!

Paul is going back in hospital next week for bone grafts and another piece of metal work to hod things in place for the next 6 weeks. He will be in plaster a further 6 weeks. This is all much more complicated than we thought and his return to Glyndebourne this season will now have to be cancelled. At least he has a teaching job in Tonbridge for now but he is very concerned that the 2 years out of opera this accident has resulted in will be very hard to make up for.

Thank goodness for Mum and Dad who are here to hold the fort for the next 2 weeks while I run (probably literally in the name of marathon training!) between hospitals!

New plumbing

I must apologise for such a long gap between posts. It has been incredibly busy here with the beginning of term and getting back into work after Christmas. I had a huge backlog of work and had to get my head down over the last week and spend every available moment writing strategy documents. I finally caught up today so here I am. Those of you owed thank-you letters and Happy New Year phone calls for Christmas presents, I am sorry, I have been thinking of you and certainly haven't forgotton. You will now get them over the next few days, I promise! William has been practising his "Happy New Ear" so will jump at the chance to offer some more greetings!

We were offline for a few days last week as we were back in Chelsea and Westminster for William's new Hickman line. He also has a nice smart new gastrostomy and combined jejenostomy. This is now attached to a small bag when Wills is in his chair or in bed to enable his stomach to drain freely as this tube does not aspirate via a syringe as effectively as the old one. This is because it is much smaller which is so much better for William. He is becoming very aware of his "gatotomy" and "tipman line" and, of course, ted has new ones too! The procedure went well but took a while as the inside flange from the old gastrostomy could not be pulled out as William's anatomy has been altered by previous surgery. In normal circumstances, this would be passed but with William's sever gut immobility it will probably just sit in his stomach for the foreseeable future! William perked up very quickly after the op and was very soon playing with his beloved "dadoot" We were in the hospital for a couple of days and when asked what the next stage was, I was told that really, there is no next stage. As things stand at the moment, William will be treated for things that pop up, like line infections, but there is really nothing else that can be done. It seems the transplant is out of the question. We are seeing another neurologist at the end of the month and we'll see what comes of that.

While we were in hospital we had the great news that lovely Emily got her lung transplant!!! You may have seen her today on Watchdog! Her blog is a total inspiration and, as I have said before, worth a read at www.pinkandsmiley.blogspot.com

Marathon training is going well and I did a 10 mile race on Sunday. I was very pleased to finish in 1 hour 37 minutes and 30 seconds, despite a long 2 mile slog up a hill twice in a 2 lap course. I have put the picture up here as it the first I have seen that makes me look half way athletic - I usually look as though I am walking! (the image has been paid for but, as yet, I have not been sent the version without the watermark. I will replace this when I receive it). The girl I am racing to the finish line is a fellow Strider team mate and we crossed the line at the same moment, recording the same time to the second! It was all very friendly and she gave me a lift home afterwards! As the long runs get longer it is going to get harder to fit them in and some very careful negotiation is having to take place, especially now Paul is back at work at the school!

The girls are back at school and Hope moves ever closer to her teenage years, spending most of her time e-mailing friends. They have been entertaining us with their dances, inspired by "High School Musical", the "Grease" for their generation - though not a patch on the original!!!

Happy New Year!!

Like most people, New Year is always a time I find myself reviewing what has been and what we hope, as well as what we fear, is to come. This Christmas, so many people wrote in our cards greetings about hoping 2007 is a better year for us! The same messages were written in the Christmas cards in 2005, when William was in hospital for more than half the year. Infact, the message was even there in 2004, following William's premature birth as a result of me being very ill and spending a month in intensive care before hand. To many people, it must seem like we have had a dreadful 2006. It started with William in hospital, where he had been for many months, and the news that he was probably not going to get better but that we needed to learn how to look after him in the home within a framework of pallitative care. Then, in February, we nearly lost him in a very scary incident of septacemia. He eventually came home later in the month and, after so long being a pretty fragmented family, we had a somewhat difficult period of re-adjustment where it was clear how much the girls needed their Mum and how difficult it was for them to adjust to having such a sick brother and feeling so different from their friends. Luckily, with the help of child bereavement counsellors and sibling days at CHASE, the girls are on fantastic form now. William continued to have medical emergencies throught the year but we have learned to deal with IV antibiotics etc at home now so he only stays in hospital when he is dangerously acutely ill. Of course, things had taken a bit of toll on Paul and I and we often took that out on each other Things were just beginning to settle when it became clear that William's problems were more than just his intestines and he was developing physical disabilities. We were told he had a wider neurological condition and then, the very next day, before we could get our heads around that, Paul had his accident. Paul was then in hospital for a month, followed by 3 months with an external frame on his leg. He is still in plaster and further surgery is a very strong possibility. On top of that, poor Paul had the flat he still has in Tooting flooded and, last night, just as the year was coming to the end, it was burgled (as found today by his parents who were round to get it ready for the huge rebuilding work needed following the flood).

When you look at all the facts, it has been a difficult year. I have purposely not put any new pictures here. There are plenty to post and they will come tomorrow, but for now, if you would like to see some picture, look back over the ones there are on previous posts. Think for a minute what you see. OK, there are the odd ones of William poorly and the washing that results from his never ending and uncomfortable fluid loss. What shines out, far beyond any of that though, is happiness. William is the happiest child I have ever known. Hope and Ellie are now back to their very happy selves. We have had some amazing times this year, CHASE has been a huge positive impact on us all and have helped us cope with things - as well as providing some memorable days: a special zoo trip, Legoland, family fun day, sibling days, music therapy, swimming, parties... Then there were the meetings with footballers and pop stars. Above all this are the wonderful people we have met and made close friends with because of the situations we find ourselves with William. I have spoken of these friendships before and how important they are. Many of these friends have lost their children. We nearly lost William and we nearly lost Paul - but we didn't and that must, surely, make 2006 a fantastic year!

So, has 2006 been such a bad year. Look at the smiles and judge for yourself. I think, a challenging year is what it has been and, will 2007 be better. Well, in those terms, probably not. William is in the same position medically as this time last year but now has emerging physical disabilities to learn to cope with. He is getting older and noticing things so this will probably be the year when he begins to understand some of the ways he is different to others. He will carry on having his emergencies. More surgery is a certainty, in fact, this begins on Thursday when he has to have a new hickman line. We may well have to think some more about transplants and other similar treatment decisions. Paul may well have surgery. Hope goes to secondary school. Of course, we still live with the very real fear that the very worst may happen to William this year. Some may look at this at the end of the year and feel the need to write, "may 2008 be a better year!" But this isn't a going to be a bad year for us, it it going to be another year of what is now normal for our family (Paul's leg is not so normal and lets hope that is all sorted by the end of 2007!!!). It is going to be another challenging year and, let's hope, an easier one because we are learning how to deal with these challenges so much better. We will have our sad times and I remain vulnerable to sudden tears when we are having a fantastic day because I never want this life with William to end and, one day, it probably will. I'm sure this year will see lots more happy photos of a family having a great time! There is also the small thing of the marathon on April - as if I didn't have enough challenges!! Above all, we will carry on making the most of every day and living 2007 as full as is possible. I hope you all have a fantastic 2007 too and for those of you who have given us so much support, from our parent's who we could never cope without, to those who leave such encouraging messages on here - THANK-YOU!!! It makes a huge difference to us.