Tuesday, July 15, 2008

Encouraging Stories

Ellie is STILL on a huge high from Friday (blog below). Long may it last - it is so lovely to see her full of happiness and how an 8 year old should be. William is getting into the spirit of things too and now knows most of the Joseph songs. His favourite is definately 'Jacob and Sons'. He was also singing the beginning of the prologue earlier today. That was a bit of a difficult one - the sound of his little voice singing 'Some folk dream of the wonders they'll do, before their time on this planet is through'. He is currently very much into his lullabies at bedtime, one of his favourite's being 'You Are My Sunshine'. I have had to leave the room a couple of times and pretend to take longer than usual to find his pyjamas.

Things are very raw at the moment with the transplant assessment getting ever closer and following Friday's clinic. The weekend excitement has not passed enough for me to think about what was said and what, unfortunately, Ellie overheard. William's doctor explained that she thinks we will eventually 'loose the fight' with things the way they are as William has very limited venous access for the Hickman Line that delivers his TPN. He also has infections far too often and is now getting liver problems, such as his gall stones, an enlarged spleen and some evidence of damage to the blood vessels around the liver. The liver aspects (apart from the gall stones) are all very minor and totally reversible at the moment but shows his body is struggling with TPN. This is why we have reached the time where an urgent transplant assessment is necessary. William was referred to the transplant team in May and we were all expecting his assessment to take place within weeks. We had thought that the Birmingham team did not agree he was quite so urgent but have since learned that, sadly, all the children referred for transplant over the last few months have been urgent cases. Everyone is disappointed that they can't all be assessed as quickly as usual. However, we are expecting William to be assessed in the middle of August and he is unlikely to be bumped down now as he has some acute problems that need addressing after his assessment. We have been warned that the small bowel transplants are not as successful as 'solid organs' such as heart, lungs, kidneys, liver etc. This is very difficult because you feel stuck between a rock and a hardplate. If we go for transplant we could loose him and his life expectancy is not that encouraging. If we don't we could loose him and his life expectancy is even less encouraging. Either way, if the outcomes are not good we will feel we made the wrong choice. We both know the transplant offers the best hope and, by far, the best expected quality of life and are hoping more than anything that William will be accepted and listed.

Earlier today, I managed to prize Ellie off the various Lee Mead appreciation websites and You-tube vidoes of 'Any Dream Will Do' long enough to look at some stories of other children who have had bowel (and liver in these cases) transplants. I am so glad I did. Many people reading this blog are family and close friends so you will all be as encouraged as we are. Have a look at this http://www.transplantkids.co.uk/stories.html - Aaron and James are the bowel/liver children. Aaron had his transplant at 3 years old and is now an 11 year old snow boarder, mountain biker and footballer, as well as transplant games medalist. James also had the transplant at 3 years old, was eating 2 weeks later and went home 5 weeks after the transplant. Of course, it isn't easy all the time and both boys have had their ups and downs. I so want to be able to post pictures of William eating on here. Both of these boys had their transplants around 3 to 4 months after being listed. Wouldn't it be something to have a picture of William nibbling at Christmas dinner. We have heard other stories and, Jo, if you still read the blog, my thoughts are with you and the family tonight. However, myself, Paul and the girls have all read these stories today and feel so positive about them. William is amazing. He is such a little star and everyone who meets him is touched by them. When he sings that Joseph prologue, I know that he has already made more of an impact than many people do in a lot more years on this planet. Since having William, that song always brings tears to my eyes and, although I never give up hope, I never let myself dream too far into his future. Seeing Aaron at 11 years old is incredible. I hope we will be posting pictures of William at that age. It almost feels safe enough to wonder for a while what he may be into when he is that age. Mind you, having only experienced girls growing up I actually don't have much of an idea. Perhaps, for now, it is just as well.

2 comments:

Making Tracks said...

Hey Sarah

Goodness- what precious moments you guys have been having recently!

The transplant decision is just a difficult one. Let your faith carry you through, what ever decision you make on Will's behalf will absolutely be the right one - there is no question about that.

Keeping you all in my prayers

Lisa

Roobarb said...

Hiya Sarah!

Only just catching up with your blog. Sorry! I do think of you all quite often but I never seem to remember to look at this. It was only when you posted on Fetch that I thought 'Doh!'.

Deb xxxx