Saturday, January 27, 2007

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!!!

Friday, January 26, 2007

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?"

Tuesday, January 23, 2007

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!

Friday, January 19, 2007

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.

Tuesday, January 16, 2007

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!

Tuesday, January 09, 2007

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

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!!!

Monday, January 01, 2007

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.