Christmas comes but once a year...

This year, we will be having two. We promised the girls a Christmas when William came home from the hospital. We were separated for the real thing last year and the thought of our special Christmas together really kept us all going through those long weeks after William's illeostomy operation when we were battling to get his fluids and electrolytes balanced.

We had a Christmas party on Friday complete with mulled wine. People were so generous in briging cards and gifts for us so there was an exciting pile under the tree to tease the children. William enjoyed the pary food too - it all smelled good. He carefully arranged two cherry tomatos on the table and announced to all that he had 'made an illeostomy'. He had a fab time playing engines with one of his friends. This was great to see as he is not very good at sharing, especially engines, and can find playing with other children a bit overwhelming.

Today was our 'Christmas Day' and we had the works; a real Christmas tree, bucks fizz and smoked salmon for breakfast, dinner with all the trimmings and lots of chocolate and mince pies. Father Christmas very kindly returned to fill the stockings we left hanging on the fire place over night. There were plenty of Thomas goodies, including a fantastic track table made by Paul. The girls had a mix of pink fluff and glitter and make-up, chemistry sets and pens and pencils. The icing on the cake for them was a laptop...each. They are combined Christmas and Birthday presents (although their birthdays are a way off) but will help them keep up with their school work and friends when they have to stay at Mum and Dad's next time William is in hospital. It is too much for Dad to move his life into our house any more so, in future, Hope and Ellie will go to them in Stoke-on-Trent with educational support to keep up with school. The lap tops are brand new ones, designed for children and a bit different to traditional ones. They are called EEEPC and I'm sure Paul will blog more on the technical info. They are arriving on Tuesday so the girls had to settle with IOU notes today. The laptops have built in web cams so we hope we can use those to chat live when we are separated again.

It was a fab day and felt very authentic. It was strange to go to church for a Lent service rather than carols. There was no Christmas TV either - that was not so missed. The girls made up for both the lack of festive entertainment and religious input with a rendition of the Nativity story complete with songs. Thankfuly for them, my camera was lost under the goegraphical layers of wrapping paper at that point in the day.

Back to normal tomorrow for the first time in 3 1/2 months. The girls are back at school. William has 3 sessions at playschool, a hospital appointment and a driving lesson on the power chair. I have a training day to do with some Brompton Fountain Area Co-ordinators and need to get back on track with work in general. It is going to be a busy week and challenging to get into routines to manage everything along side William's new needs. I'm sure there will be plenty of fun and mishaps along the way to post on here.

A Grand Day Out

Aren't these just lovely pictures! We had a fantastic day out today. We started off watching the guards depart and arrive during the changing of the guard at Buckingham Palace. The Queen was in today so they all saluted her and the retiring life guards paraded to the front of the palace and saluted her with a bugle. I wonder if she actually watched these salutations anymore? We were guided through the action by an old chap who watches every single change - every other day in Winter and every day in the Summer. He was very helpful and spot on with his timings.

From the palace, we walked through Trafalgar Square (stopping at The National Gallery for a nappy change and bag empty), through Leicester Square and China Town to The Rainforest Cafe. We won a £35 meal voucher in a raffle at our community nurse team's family day back in September. The voucher went out of date last week but, when I explained the situation, the manager let us come anyway and in half term, when the orignal voucher wasn't valid. It is an amazing place. We certainly wouldn't have been going without the voucher as it is not at all cheap and the food is pretty standard. The atmosphere and effects were amazing. We had a pair of elephants watching over us as we ate and gorilla's and monkeys were near by. All the animals are animated. A star lit sky was above us and thunder rumbled from time to time. We were promised a good table and we certainly had one. The only problem I had was that there are no disabled facilities and the restaurant is down a steep flight of stairs. However, the staff bent over backwards to help us to get Wills down there. The children had a great time. Willam, as ever, enjoyed pushing engines around the table and smelling chips.

After lunch we revisited Trafalgar Square where the children ran around together. We went back into the gallery for another nappy and bag empty but this time stayed to look around a bit. At the suggestion of visiting it properly, Hope complained that galleries were boring and then complained that we weren's spending long enough at each painting once we were in. I promised her a return visit on our own so we can stop, stare and talk about the paintings together without her younger siblings chomping at the bit.

Hope, Ellie and I decorated our Christmas Tree whilst William played with his engines on the table. A perfect day really. William does struggle with pain while sitting for long periods. We have to build a bit of a jump around to help him drain every couple of hours into days out like this. It is a bit of a military operation really with all that needs to come with us and timing medicines, flushing TPN, bag emptying... All well worth it though, just look at those faces!

Home Sweet Home

 
 

We are home and William is finally enjoying his new garden. He can't wait to get out there as soon as he is off his TPN. I must admit to enjoying simple things like washing his sheets and Hope and Ellie's uniforms and haning them out in out lovely new garden on such a lovely sunny day (although rather cold!).

We are settling down and getting used to the practical challenges, such as William's illeostomy that drains huge amounts every time he moves, coughs, sneezes, laughs... We now know that his bowel really doesn't move at all. We also know that William secretes enormous amounts of fluid and salts though his gut. All this pools in his distended loops and floods out when he moves. This can result in some very messy situations if the bag fails. We have him attached to a urine drainage system over night and when he is in his chair but it is tricky when he is running around. He is very patient though, not least because he hates having his bag changed when it leaks. The illeostomy has certainly helped decompress his gut but he is still very distended and often uncomfortable. His x-rays still show obstruction - in William's case due to "pseudo-obstruction", meaning obstruction due to gut motility failure rather than a mechanical blockage. They are still awaiting some neurology tests to see if he is suitable for transplant assessment. It is highly likely we will find ourselves back at Birmingham for assessment at some stage. We also face some tricky decisions as to whether we opt for painful surgery to correct his feet deformities or decide that we let things be, resulting in increasing disability and potential wheelchair dependence. We will face all this step by step over the coming months but, for now, we are home and enjoying being together. We are getting festive too. For us, it is Christmas Day a week on Sunday!


 
 

 
 
 

Nearly there...

We should be going home the week after next :-) :-) Wills is soooo much better after his op. He is still pouring out way too much from his illeostomy. Some tests suggest he may have a complicated storage disorder - his cells don't store some of the nutrients they should and so they leak into urine and into his bowel. This could be causing his "leaky bowel" and inability to absorb in the gut, as well as neurological problems. He needs a skin and bone biopsy to clarify the diagnosis. We have been trying to get the neuro team to see him for the last 2 months (his consultant and reg left at same time so he slipt though the net a bit) and they finally caught up with us yesterday and said the biopsies were needed. Doh, could have got them 2 weeks ago if they had actually spoken to the gastro team and surgeons. The NHS still struggles with multidisciplinary working. The neuro reg also said Wills needs urgent physio while he is in as he loses function when he is ill...I asked for that on his first day in... Oh well. Things are coming together. Wills is back to 20 hour TPN and fluids for the first time in 2 months and we can take him out during his 4 hour break. He can also toddle free of lines for the first time in as long. I can't wait to get him out of here later this afternoon :-). If all goes well with stabilising him on his TPN we should be home the week after next :-) :-) I can't wait for us all to be home together again.

Tummy Trumps (a long overdue update)

I have been so rubbish at updating this blog lately that readers have switched to Paul's (see blegspot.blogspot) for updates. I am sorry, please do come back and I will try and update more regularly...promise....
In my defence, Paul does go home to our lovely internet access every evening and I have my precious hour a day in Starbucks where I have to juggle priorities and keeping up with work tends to dominate. For some reason, I can't access this on my BlackBerry but can get on the running website, Fetch, hence being able to post brief updates there. That's my excuse, another reason for blog silence has been that the last few weeks have been so confusing with William's illeostomy discussed and discussed and decisions changed and altered acording to how many bugs and yeast he had. It has all been a bit much to keep up with, let alone tell others about.

Even Paul had a bit of a gap in his entries and updated just yesterday. There is no need to repeat what he has said so well so I have shamelessly lifted the following with some different pictures of Wills over the last week. He wanted his beloved Thomas books as soon as he regained consciousnes, although in his bleary post anaesthetic and morphin pumped state he did ask me where the books he was cuddling had gone! I have chosen some pictures that show the stoma. I will take a better picture of that for the blog, not least because it may be of interest to another family who are about to undergo a similar procedure. William has a "double barrel illeostomy" where both ends of the cut bowel are bought through the skin. One drains the stool from the small bowel and the other, the mucus fistula, drains mucus from the colon and can also be used to wash out the lowere bowel. There are also some lovely pictures of Wills with Grandma and Grandad on Monday when he was feeling a lot better.

So, over to Paul...

"William has taken a little while to recover from his operation. He discharged himself early from paediatric HDU simply by constantly declaring to anybody who would listen that he wanted to go back to his room, and generally refusing to co-operate unless his demands were met. I can’t think where he gets his stubborn streak from. However, progress has been slow since then. He took a while to be weaned away from his morphine pump, and confidence in his ‘magic bag’ (the ileostomy bag) has been knocked by the realisation that there was a deal of initial pain involved. The ileostomy itself is none too pretty, and William is keen to ‘clean it off’. In fact, he has two chunks of his small intestine poking through his abdomen wall – ‘stomas’ - and cleaning them off would not be the way forward. But they are doing their job, as they are constantly leaking the unpleasant fluid and gas that were making him so uncomfortable before Christmas. The slight downside is that they are leaking so efficiently that William is now on enormous amounts of IV replacement fluid and still suffering symptoms of dehydration. He has also developed a slightly disconcerting habit of unconsciously farting through these ‘stomas’. As I earlier blogged, there is some quality toilet humour ahead of him.

He is really on the mend now though, and has gingerly returned to his habit of toddling around the ward with his daddy literally in tow. He is re-asserting himself as the ward character, although more through his fantastic eccentricity than any charm offensive. After he had told yet another nurse (S – a wonderfully efficient and caring professional) that he didn’t ‘want that one’, I thought it best to start trying to address his issues with politeness. “Let’s role-play,’ I suggested. ‘I’ll be S. When I say hello, you say hello S.”

‘No,’ suggested William, ‘you be a giraffe.’

A little more work is required. "


Back to me now and today's update...

The doctors were very concerned about William having such a huge output from his stoma. We tried loperamide (immodium) but that just went straight through him. We are now trying an IV drug called octreotide. This is a drug that acts on endocrine system to switch off natural products the body is over sectreting. It can be used to control heavy bleeding, to shrink tumours and to treat over production of insulin. We are hoping it will get control of William's huge over secretion of bile and gastric juices. So far, it looks promising. The draw backs are that it is an artificial version of the hormone that acts as a growth hormone inhibiter and also inhibits insulin production. Wills is on a very low dose so we are hoping it will not have these actions. Even if he does, we have to get on top of the secretions and we hoe to use the drug for just a few months. He is also struggling with an ever dropping red cell count as a result of his losses. He is having another blood transfusion today. We were warned that Wills would take his time to settle down after this op.

We all have to be patient but it is getting harder on us all. Lots of discussions are now taking place on how we can manage long admissions like this in such a way that we are all happy, especially Hope, Ellie and Mum and Dad. Plans are being formulated but can't be blogged until they are discussed further and everyone is happy about them. I just wish we could be given a home in Chelsea so we could always be together and the girls could be schooled without any disruptions. Shame William's hospital is in one of the most exclusive and expensive areas of the country!

Making the best of things

We are still in hospital and about to get stuck in the Christmas holiday shut down. William can't have his op until early January as he still has yeast in the line. We will then be here for a month or so afterwards. It is all very frustrating and heartbreaking to be seperated from the girls for so long. Here are some pics, and a video if it works! of Wills making the best of Christmas in hospital. Some pics of the girls visiting on Tuesday will follow soon (when I have uploaded them)

Ups and Downs

The pictures you see here are of my beautiful daughters. We had a fab time last week on a Thomas Cook/Variety Club "Flight of Dreams". We met the Samantha and Amanda from Big Brother and Father Christmas managed to get his sleigh along side the plane and climb in! He was our exercising his reindeer. We had a lovely time. Sadly, Wills was not allowed to escape to join us.

William has been sent lots of messages on Giraffes, as well as some new cuddly friends, as he has been featured on the CHASE Christmas fundraising campaign. He is loving them all and they are really cheering him up. He is still fighting endless infections and in a lot of discomfort. The doctors have now agreed that he needs an urgent illeostomy but there is still much debate as to whether it will be before Christmas. His usual surgeon is away so the decisions are surounding whether another surgeon should do it or if we should wait until our man returns at the end of January. It is really frustrating. I just want them to get on and do it so he can start recovering and get home!

What happened to November?

We didn't manage to stay home! William got sicker very quickly over night 3 weeks ago so we went to our local hospital. Within hours, we were blue lighted across London to our Chelsea pad and the line was out the next day. Wills had a week on fluids with no line. Peripheral access is a nightmare so it was an unpleasant and plainful time with lots of cannulas and nasty, strong drugs being given into veins. He had a new line and is getting over his infections. However, he now has issues with electrolyte balance due to all the antibiotics he has been on. He is back on hospital TPN at the moment but we are hoping to get him back onto home formulation soon. He is also very gassy and, just to thrown something new into the mix, has started passing blood in his constant watery stools. His poor botty is so sore too, because of the constant nappies, that he is needing IV pain relief. They are planning to see how he is over the weekend, now his antibiotics have finished, and see what to do next. He was due to have further exploratory surgery in Spring but this has been prioritised further now and they want it to be early in the New Year. There is a chance he may even have it before Christmas. There is also a small (but I think growing chance) he will need an illeostomy before Christmas if the gas and discomfort carries on. If his colon is broken down from all the gass and watery stool, in the same way his bottom is, he may need it to rest everything so it can recover. We need to find out what is causing it all.

So, another interesting run up to Christmas with the heart break of being separated from the girls at such a special time of year.We are all due to be going on a Santa Special flight for Gatwick on Wednesday. None of the children have flown as holidays abroad are out of the question at the moment. The trip is with the Variety Club and organised through the hospice. I asked if I could liberate Wills for the day but the consultant's response was very clear! I will still go with the girls though and I'm sure the day will be all the more special for them by having Mummy to themselves with no William and hassles around TPN and drugs.

Unwelcome return visitors

The full report on William's blood cultures came back today. He has the same bug in his line he had a few weeks ago :-( This is not good news as it means the little blighters have been hanging around and building up again when we stopped the IVs just a week or so before he got sick again. The IV of choice now is called imipenin. We were going to start that today but pharmacy felt it a bit too complicated to measure and prepare for home. It would have meant hour long infusions every 6 hours - not much chance to sleep. We can use something else called merepenin. This can be pushed rather than infused and is 8 hourly. He was on this last time. Fingers crossed it does the trick or we will have to go in to have imipenin, or may even loose the line :-( He only had it in at the end of August and has had 2 lots of infection, from the same but, already. I have to admit, I got a bit teary when they told me it was the same bug. He has had 7 line infections since the start of the summer. This year, he has lost 4 lines to infection. This is a bit worrying as there are only so many sites that can be used.

We have had a lovely day today though. William got his new static chair - he had chosen bright orange "like Murdoch" so I bought him a Murdoch engine to go with it. He has spent most of the day pushing this around the tray. When I did prize it off him, we collected leaves and painted them in Autumn colours for leaf printing (just like in CBEEBIES for those of you who have little ones too). Despite still feeling grotty, William had a "driving lesson" on 'bugsy', the special training powered wheelchair yesterday. He was really beginning to get the hang of it. We played games like throwing a ball and going after it. He was beginning to drive a lot more smoothly but still has a lot to learn before he will be deemed safe to drive and allowed his very own powered chair.

Another line infection!

William has been unwell since the weekend. He has bronchiolitis and has had some high fevers. We hoped this was all due to the virus but, yesterday, we got the call to say that one of his blood cultures does have a bug. Once again, it is one of his gut bugs. He had cultures earlier in the week that were clear so it looks like he has ended up with another line infection due to being run down and unwell. He has been neutropenic (low white cells) for the last 2 weeks so that doesn't help either. He is doing OK at home on the IV antibiotics so, hopefully, they will let us stay here.

A very, very long day...

We had our long anticipated appointment with the neuromuscular team at The Hammersmith Hospital yesterday. It was a very long day and left us all absolutely shattered. We left at 8, had a heinious public transport journey with 4 changes and got to the hospital just past 11. We were there until 4.30! No breaks 4 hours of physio, doctors and an ECG. Then we had the long, and much slower in rush hour, journey home. We finally got back at 7.

It was a strange clinic. Very old school. He had a physio assessment and she was very strict with him. I could see what she was trying to do to get him to bend his feet up etc but he didn't really understand her. He had lots of tears yesterday when physios and doctors were trying to straighten his feet and it really hurt him. After physio, I had to find a space to do his IVs. I had a message waiting on my phone to say he was even more neutropenic now so I wasn't overly comfortable that I had dragged him across London on public transport and into a hospital. The clinic is monthly though and we would have waited ages for another slot. The doctors consultation was very strange and frustrating. The reg came and went through all the history - and it is a long and complicated one! That was fine. I am getting bored of going through all this but it is important. Then, the consultant came in and she presented William to him. If he had been in from the start it would have saved about 20 minutes of history repetition! Another consultant came in so there was a neuromuscular guy and a mitochondrial disease specialist. They pretty much talked among themselves and then examined him, still talking among themselves in a language I had no comprehension of. They poked and prodded and stretched, making exclamations such as "oh yes, there is definately some xxxx here and yyyy there" They took loads of pictures of all his features such as his feet, wide set eyes, funny hair etc and added a few more features that they felt to be significant, such as sparse eyebrows and translucent skin. They did comment on how tiny he is too.
After all of that, they pulled their chairs around at the opposite end of the room and had a discussion about him. I was just an observer and hardly understood a word.

They did tell me that they need to do more tests. He doesn't have a muscular disease, in their opinion. He is too strong, all be it in short bursts, but he does have strength. They feel it is not peripheral but a central problem. They have some more wierd and wonderful ideas of very rare syndromes (some to do with glycogen storage, some mitochondrial) to rule out before they just conclude that William has a "unique phenotype and genotype". Like the geneticists, they pointed out how unique he looks and how it is clearly a genetic problem but that it does suit him and he is a lovely looking child. He is very different to the rest of us, as you can see in the picure, and has a very distinctive look. They also commented that Wills now has spacticity, particularly in his legs, this is a new development as they were not too tight until recently. He feet can no longer be manipulated back into 90 degrees.

I will look forward to the letter with the hope I can understand something from that.

Colds

Thanks for your wishes We went to the hospital to put Wills on his TPN. Thankfully, this time there was no repeat of the horrible evening a few weeks ago. We can't afford to take risks though and we will do exactly the same thing another time. All 3 children have rotten colds. Hope and Ellie are fine, just coughing and husky. William is termed a "medically fragile" child so anything extra takes its toll. We will keep an eye on him over the next few days, keep him on his monitors over night and have a low threshold for using oxygen if he struggles a bit over night. Winter is a hard time for these children and we feel like we are constantly on edge. I hope we have a healthy run soon. It is tough for the whole family as the grandparents are always wondering if they will be needed too. As you may have grasped from this blog of late, we can get a bit frazzled! Wills is booked into the hospice for New Year and the girls are at their Dad's. Paul and I are planning a couple of days away together for the first time since William was born. That should do us heaps of good

Love to all those other parent's of medically fragile little ones. I pray they all stay as healthy as possible over the winter months ahead.

The joys of winter!

William's temperature went up to 37.8 at playschool this morning. I called his gastro nurse who requested bloods when he came off TPN at two. Last time we had a day like this, with high temperatures but not quite high enough to hit the panic button, we ended up sending him into septic shock when we restarted his TPN in the evening, pushing all the nasty little bugs into his system. I just can't take that kind of risk again so we had arranged to take him to the local hospital to put his TPN up whenever there is any doubt that he may have a line infection. With a child like Wills, you have to presume a line infection whenever he spikes a fever over 38. So, at 37.8, we are pretty close!

I called the community nurses to arrange everything but they are pretty overworked today with one of them home with their own poorly child. Oh, the joys of winter! Sick children and a struggling NHS. It is so stressful when a bad day for Wills can result in a situation where his life is in danger. Of course, the staff to their best, but it is very disconcerting when your security net falls apart, right when you need it. The ward are full and not overly happy about us coming in tonight. I told her that I am just not prepared to do the TPN at home today. So, we will take him up to the ward and, if he gets very sick, the crash team will be called and he will be stabilised and sent to the nearest bed. He is coughing and wheezing so I hope that is all it is.

So, we wait again, to see what his bloods show, to see if he goes into sepsis or if this is just a winter virus. In the meantime, I will get the girls from school, tidy the house and make some contingency plans. There will be lots more days like this before the Spring.

Spidey Sense

It is really strange, all that Spidey Sense with me on Monday. Along side that, I posted it here and my Mum called me about 2 minutes later as she just happened to look there as I posted. Paul's Mum called on Tuesday morning to ask if Wills was OK as she had a feeling yesterday that things were not right and had just looked at the blog to see if there was anything to let her know if all was well or not. How very strange, Mum and both Grannies (at opposite ends of the country) feeling the Spidey Sense that all was not well - spooky! It must be the time of year

William's bloods show his HB is OKish (OK for him) but he is neutropenic, meaning that he does not have enough white cells to fight infection. This is usually an indication of something going on but, for now, his infection markers are OK. He seems OK in himself, apart from gas, tummy aches and a very very sore bottom. We just need to keep a close eye on things.

Spirals of unease

I have been feeling really uneasy about Wills all day. His play specialist came this morning and remarked on how pale he is. I agreed and she said, with much concern, that he looked a funny, horrible colour - grey really. She was right. He soon picked up but things don't seem right and I can't really put my finger on what it is. He doesn't have a fever. We took his routine bloods and cultures from his line so we will see if there is anything going on. He may just be very anaemic and need a blood transfusion. I hope so really because that will explain things and a blood transfusion will make things a lot better. He is really gassy at the moment and having a lot of pain and lots of bile draining from his stomach. He is clearly feeling yukky and this may have a lot to do with how pale he is. His nappies are pretty spectacular too!

I had a lovely run but started to think too much about Wills and what may happen. This helped to feed my sense of unease and upset. Occasionally, I get into a spiral where I feel nervous about things and then think that is must be due to some maternal intuition so worry even more. Today has been a bit like that. I have William on his monitor tonight. I'm sure all will be well and I will feel much better tomorrow.

The extra hour

So, what did you do with it? I had planned to get up and do William's IV drugs as if there was no extra hour, so at yesterday's 6am/today's 5am. I then planned to go out and run and be back by the time everyone else was busying around getting ready. Did that happen...er...no. Instead, my alarm went off at 5 but I switched it onto doze and ended up giving William his drugs at today's 7am - so an hour late if a normal day, now 2 hours late!

Oh well, it has been a very hectic couple of weeks. Paul has been singing in Birmingham most evenings, getting back in the early hours of the morning. Of course, that has made him very tired. It has also left me doing everything for Wills both late at night and early in the morning, making me tired too. We obviously needed the extra hour of sleep and i can get my run in later.

I have just realised that the hour is going to mess up all William's timings. The biggest impact will be on his TPN. It should stop at 2 but, of course, willl stop at 1 today - just as I am on the field finishing the football session. Not the best place for aseptic procedures! It is the last day of his IV antibiotics today - hooray!!! Now we have to keep everything crossed that the little blighters in his line have well and truley gone. He has been having a few low grade fevers over the last couple of days. Probably all due to winter viruses but we are really hoping the bugs won't come back. Our biggest fear is the yeast and fungal infections he often seems to get in his line after having domestos style IVs to kill the bacteria. A few nervy days of watching for signs and symptoms are ahead of us!

Half Term

The pictures show
1. ALl the medical stuff and nappies that arrived on Monday - what on earth am I supposed to do with all of that? It is a months supply of things we need for William and is totally filling our little "lean to" I did have plans for that to be all arty and bohemian when I bought this house...

2. Ellie arriving home from Honey Pot (Hope would not be photographed!)

3. William attached to his ECG. All smiles but he has been having a very uncomfortable week this week with lots of windy and colic. I am very sorry for the large hole in the ozone layer above Croydon that has appeared this week! We will be without a car from Monday so should be able to do some carbon offsetting.
The last few days have been absolutely crazy.

The girls came back from the "Honey Pot" holiday in the New Forest, on Tuesday, having had a fantastic time. They went to a theme park, a country park, an otter sanctuary, had a halloween party, a cook out...they even had clothes stall where they could choose from donated clothing - all for free. They came home with treats and things they had made. The idea is that this is a respite break for children who need a break from home for various reasons. The timing was great for Hope and Ellie with William having just been very poorly again. He is still on IV antibiotics so we have been unable to have any big days out this half term. It was great they had this instead. They will remain members of the "Honey Pot Club" until they are 12 (not long for Hope) and will have newsetters, a Christmas party, play bus visits and a weekend at the house in the New Forest every year. They so deserve this and I have loved hearing all about it. There is a bit of sadness too as I would much rather we could do more as a family.

We have tried to make the best of half term within our constaints. William had his 24 hour ECG on Wednesday - Thursday so the appointments to put it on and take it off munched up the mornings. We wondered around town and went out for lunch on Wednesday. Yesterday, William's Granny came and we baked and made things out of salt dough. We will be painting them later today.

All of William's activities and visitors stop for half term and he is getting very fed up being stuck in his chair on the TPN until 2 each day. Next week, he begins his "driving lessons" on his electric chair. That will give him a great lease of life as he will, at last, be mobile on his TPN His walking is getting more and more weak and wobbly too so the chair is going to be fantastic.

A good night's sleep then back to normal (I hope)

YAY, we got home today Wills is much better but we will still be doing the IV antibiotics for the next 12 days. I get really nervous doing his TPN after such a nasty line infection. The rate he goes downhill is so so scary and it takes a while to get the scene out of your head. Of course, being mindful of infection risk is important but you really need to stike a balance. Wills tends to get infections from inside his intestines that translocate into his lymphatic system and then settle into his line. It is good to know that our IV technique is not introducing bugs but worrying at the same time as we can do nothing to control William's gut bugs. His intestines don't move properly so bugs settle and breed. His recurrent infections are causing cause for concern, not least because he is developing a nasty habbit of getting septic shock every time!

His heart murmur is, thankfully, nothing to worry about. It was just because he was so ill. However, the irregular rythmn he seems to get from time to time is a bit more concerning. It may be that his neurological condition is affecting his heart. I was really upset to hear this. However, it sees that any impact his condition is, or may have, on his heart, is much more easily fixed than the intestinal failure he already has. He is going to have a 24 hour ECG over the next 2 weeks. If this reveals that his heart rate becomes too irratic, he will be assessed for a pacemaker. Strange isn't it. You can fix neurological failure of the heart to behave normally but there is little that can be done if the intestines fail.

Oh well, a good nights sleep and all will begin to settle back to normal tomorrow.

Here we go again!

Today should have been the start of the cross country season and I was looking forward to our first team league race and hoping to spend yesterday evening sorting my kit and changing my spikes from 12 to 9mm ones, bake some muffins for the girls after the race etc...

Instead, William, once again did his speciality of well to ill in life threatening measures in 0-60 seconds! It was all very stressful. The ambulance service and A and E were incredibly busy and William was not given the right code from the offset. He needed to be foot down and into resus but it took ages to get an ambulance for him (Hope and Ellie had been picked up and gone before it arrived!) and, when it did, Paul beat it to the hospital! We arrived to find no room in rescus and no doctor immediately able to see him. The triage nurse was not a paediatric nurse and thought TPN was a gastrostomy feed (which is not uncommon and forgivable as it is pretty specialised). She kept thinking his infection was on his gastrostomy site - which would not have been so worrying. Maybe the ambulance crew misunderstood too, hence their dithering. When she eventually did his obs, his temp was above 40 degrees and his heart rate 167! He was losing consciousness and his lips were white. It was very scary. The doctor came, A and E doctor, not a paediatrician and, understandably, wanted William's whole history. I just wanted to see someone who knew him and would see how ill he was. When the paeds reg appeared, and was someone who knows him - thank the Lord - she could see at once how ill William was and was furious that she had not been called down before and that the ambulance had not called in to get her down waiting. She had him up on the ward within 15 minutes so we could take bloods and start the antibiotics in a more controlled environment. I have never seen A and E in such a state of carnage. It was frightening when William was so ill.

It was 2 am before I got to bed in the hospital after we being confident William was picking up enough to leave him to get the things we needed for the night , have something to eat (I had just made a yummy chilli for tea when all this happened). Paul had a stint at the hospital this afternoon and I came home to sort out the girls, see Mum and Dad and to tidy and clean the house. The local hospital is close enough to come home for a couple of hours when William has gone to sleep. We usually get into such a mess after some frantic packing and coming and going of stuff each day. It makes such a difference to come home and relax in a clean and tidy house. I now have some yummy smelling apple, spice and walnut muffins in the oven. A huge contrast to yesterday evening!

William has picked up really well today. The tests have confirmed that he does have a line infection and he is responding well to the antibiotics. His medical examinations have revealed a heart murmur though. This is a new thing and we are not sure at the moment if it is anything to worry about or not. He is due to be seeing his local consultant on Thursday and so, while he is in hospital, they will do an ECG and heart echo. One concern is that he had a nasty fungal/yeast infection in his line in August. There is always a risk of spores getting into the heart valves. There is also a chance that line infections have caused inflammation in the heart valves. It may be a feature of his syndrome or a neurological issue and, of course, it could just be an innocent murmur. We will soon find out and, in the meantime, we have learned not to worry too much about things to do with Wills until we know we have to.

Hectic, as ever

I really promise I will keep this blog updated more from now on. Things have been so hectic since we came home from hospital. We have been trying to sort out William's statement of educational need, something that never seems to work out as easily as it should and we are still having meetings and discussions about. In the meantime, I have been settling William into playschool for 3 afternoons and one morning a week. William can not be left without either myself, Paul or a qualified nurse. Thankfully, they have agreed to provide a nurse for William at playschool, despite the fact his statement has yet to be finalised. Luckily for us, one of William's lovely respite nurses works around a school day so this is perfect for her. William adores her and they both seem to have a lot of fun together.

On top of all this, Hope has been setting into her secondary school. She has grown up so much, perhaps too much. It is lovely that she is making lots of friends and likes to incorporate a social life into walking home. We have had to spend the last week or so reigning her in a bit and reminding her that she is still on 11 years old and her whole life can not just yet be organised through her mobile phone. Hope hs been chosen as a school council rep. She is also keen to play basketball and football. These clubs take place at 7.30am so we are set for an early start tomorrow.

We are all getting a bit sporty these days. Paul is currently searching for a gym to join as it has been ordered by the physio as part of his rehab. Hope and Ellie are both about to start a Christian Football Academy, Kick London, that is being organised through church. I am to be a coach at the academy and am in the middle of my FA level 1 coaching certificate. This has taken place on 3 evenings and all day last Sunday. This Sunday is assessment day when I have to deliver a 15 minute session, based on a game given to me last week. My game is a bit of a tricky one involving throws, heads and catches in a 5 v 5 game.

It is all very hectic and, as usual, the appointment letters for William are piling up. He is due to go to the muscular dystrophy clinic at Hammersmith Hospital at the beginnig of November. It now seems that he does have some kind of progressive neuropathy and this is the best team to monitor and help him with this. With his motor deterioration and time spent attached to his TPN in mind, he will soon be given an electric wheelchair. We tried one out on Monday. It needs to be adapted to make it a lot smaller and enable him to reach the controls. This will take a couple of months. This is fine though as William needs a few more lessons with the occupational therapist to learn how to use a joystick to control a chair. Tomorrow, we are being visited to see exactly what we need to do to our house to make it accessible for William. It looks like a major rebuild will be required.

It is all these practical things that dominate our lives so much. I have been juggling two part-time jobs, working from home, with it all. I have just come to the decision that it is all a bit much. One of the jobs - being the director of "The Brompton Fountain" works very well but the other is very stressful. I won't go into too much detail in a public blog. One thing we learn time and time again on our journey with William is that life is just too short. I am also fed up with playing catch up the whole time. Now I can put all my work energy into building The Brompton Fountain. Funds will be a little tight but I am a strong believer that things will work out if it is the right thing to do.

Another Year, another challenge.

It has been a while since I updated this blog with any regularity. So much has been happening and we have been so busy, in and out of hospital, possible diagnoses, starting schools, statement of educational special needs... I promise, I will catch up on all the news over the next few days, and show you some lovely pictures. For today, I want to tell you all about Sunday.

During July 2006, Paul was run over and spent a month in hospital with a horrific leg injury (He has only just been able to put two shoes on again in the last few weeks and finally has a leg that is not held up with mechano see http://www.blegspot.blogspot.com). William's physical disabilities were becoming apparent and, I have to confess, I was struggling. A good friend of mine, Emily, was struggling even more. She was in the end stages of cystic fibrosis and her lungs were barely managing to stay inflated for a few weeks at a time while she waited for a call to say her turn had come to get new ones. One day, I received an email inviting me to join "Emily's Angels" in doing the Hydro Active. Emily was planning to be pushed around in her wheelchair, attached to the oxygen that was keeping her alive 24 hours a day. Not only that, she was going to turn up the oxygen and walk the last 500 metres. To you or I, that would be an ultra! I took up the challenge and decided to raise money for CHASE, who were keeping me sane at the time with support at the hospice and in the community whilst I juggled looking after William and visiting Paul (the girls were at Grandma and Grandads). I planned to walk with Emily and her angels but felt shamed by her 500 metre walk and William's courage as he totters about, falls and gets back up again. If they can do that, I can run 5K, I thought. So, I dusted off a pair of trainers that had not seen a pair of feet for over 10 years and went out for a run in the park. Meanwhile, Emily was in and out of intensive care with her ever deflating lungs and many of us worried that she may not make it to walk those 500 metres. Emily the biggest fighter I know and escaped from hospital to walk over the finish line. I managed to jog around and finished in 32 minutes.

Yesterday, Emily and I were back at the Hydro Active Women's Challenge. A year is a long time and in the last 12 months Emily has had a double lung transplant. I have spent the last 12 months getting ever more addicted to running and more and more serious about my training. So, this year there were 2 major changes. Emily planned to walk the whole 5K, while holding a banner showing herself last year, in her wheelchair on oxygen, and this year, walking and bouncing along. I planned to run a PB and dedicate it to her and William, the inspirations that got me running. It was exciting as well because Hope and Ellie joined in with the Angels. It was also the first time I had put a team together to run for the charity I direct, The Brompton Fountain.

We got t Hyde Park at 9 to get ready to say hello to the team and prepare for a team photo. Granny came to look after William and I left Hope and Ellie with Emily and the other angels before taking my place at the front of the mass start with other club runner capable of a sub 25 minute 5K. We were just behind the elite runners and celebs so got to watch them all be introduced to the crowd. It was really exciting being at the front of such a big event and to set off on the clock. We were away within seconds of the elite runners and could even see the time car becoming more and more distant on the first stretch. I had a clear run and, as usual, set off a bit too fast. However, I managed to keep pretty close to my starting pace and finished the first mile in under 7 minutes I could have kept pushing at that pace if my legs were not a little tired, untapered in the peak of marathon training. I didn't drop too much though and kept my pace below 7:30 most of the time. Just before the final turn, I was counted in by an official letting me know that I was in the top 100 and would receive an official time. As I approached the finish, I could hear the announcer tell the spectators that the runners finishing now are all strong club runners, capable of keeping the pace throughout the course. I finished at 22:18 on my Garmin (which also told me I had run a few metres long). On crossing the line, my number was taken and I was given a bottle of Hydro Active. What a difference from last year when I staggered across the line, red and puffed out in a tutu! It was a strange experience. The area where the goody bags were given out was almost deserted and my photo was taken by 2 official photographers and 2 more asked if I wanted one. Later, when I finished again with Hope and Ellie, we had to queue to get a picture together. I walked past Meseret Defar and Jo Pavey wondering around, waiting for interviews before heading back to find Hope and Ellie. My official time was 22:27 and I came 81st out of more than 15000, many of whom were walking. I am listed, beneath the elite athletes, in the race report on the Hydro Active website (http://www.womenschallenge.co.uk).

I am not known for my great sense of direction so I wandered back to the start and jogged along to find the back of the race. Eventually, I caught sight of Emily's banner and found the girls. We walked the rest of the course together and made a pact that, if the girls can jog it next year, I will do it with them. I did enjoy being up at the front though and would love to make up a bit more ground on the elite runners in front. I WILL go sub 20 in a 5K on tapered legs sometime in the not too distant future. Emily did really well and even managed to run the last 300 metres - amazing! Ellie ran bits of the last mile and ran over the line. (As I walked over the line again, I hoped people would notice that I already had a medal on and was not finishing for the first time).

After the race, we met up with William and Granny again and had a picnic with Emily and some of the Angels. Paul turned up after singing in Church and, by now, it was getting a little cold so we headed off to the Science Museum to see William's beloved engines before setting off for home to catch the highlights. He also had great fun playing with Hope and Ellie with the hands on games in the Launch Pad.

It was a great day that marked for me how far I have come with running this year and that I can feel that there is more to come. Emily was as inspirational as she always is. As a Mum to a child like William, Emily's Mum inspires me at least as much. Her strength and amazing personality has, doubtlessly, contributed so much to what Emily is today and if I can just be part of the Mum she is I will have succeeded so it was great to see her again too. Hope and Ellie had their first taste of a big running event and, I hope, got inspired to work towards running in future. Above all, we had a lovely family day out. Next year, I will develop the charity participation to include a family picnic. It won't be the Hydro Active next year as it becomes the Addidas Women's Challenge. It will remain a special day out for me though. I will always have a soft spot for the race that got me running

Hope's first day

We are finally home from hospital and there is lots to post to catch up. This is a quickie though as I am about to go to bed. Hope started secondary school today. What a milestone day! She had a great day. I marked the day by having a "feel younger and fresher" hair cut. Much needed, not least after the weeks in hospital. The girls also had hair cuts and Hope had her first grown up layer cut. You can see that on the more relaxed, after school picture..

We are still up at the hospital every morning for IV drugs for yeast. William lost his line to a yeast infection that made him very poorly and we have to treat to protect the new one. I will post a longer entry to tell the whole story later in the week, after I have got all urgent work done!!

Life is a rollercoaster...

life is a rollercoaster...
...You've just got to jump on, enjoy the ride and cope your best during the drops.

We started trying William on a teeny tiny bit of diarolyte on sunday. By Monday, it was clear he wasn't tolerating it and tests showed he was passing all the glucose in his stools. There is a new consultant on the team and she relayed this as good news, explaining that he could have a rare inability to absorb glucose and a special feed could get him off TPN. I was so pleased but Paul was a lot more cautious as this would surely have been realised long before now. The dioralyte was changed to water to flush the remains away. On Tuesday, Wills was poorly again with another infection and has still not picked up. This always seems to happen when we try any feed. The gut challenge has been abandoned for now. He will remain on this tiny trickle of water - 12 mls per hour for 16 hours and have a new set of scopes and biopsies next month, followed by a team meeting to see if they can work out a new plan. The same doctor who was so full of hope on Monday had to explain that he will be on TPN for a long time, perhaps forever, and the priority now is sorting all these line infections. It is so gutting to be so full of hope one minute and back down again. The water is a teeny tiny baby step though.

I am so exhausted now, physically through lack of sleep and mentally too. I can't wait to get this infection sorted and get home to normalise. I am keeping up with training but it is a bit treacly at the moment. it is funny how pockets of inspiration appear right where you need them. I came back from a run yesterday and there was a cleaner at work in the bed space next door. She asked if I was an athlete, to which I said I was trying to be a club runner. It turned out that she is a girl called Fatmata Bangura, the women's sprinting champion of Sierra Leone and captain of the women's athletic team. She is a seriois medal hope for 100 and 200 metres in China. She got injured at Crystal Palace so her season is over and her attention switched to next year. She is over here for some training and has to work long hours as her government funds training but not living costs. Unbelievable dedication. I hope to see it all paying off with her up on that podium next year.