Sunday, June 24, 2007
The Island Of Sodor
Wills had a fantastic day today, well we all did. As followers of this blog will know, William absolutely adores Thomas the Tank Engine. It is what keeps him going, it really is. When he is unwell, he watches the DVDs and reads his books and pushing engines around on a table calms him down better than anything. Of course, he plays with his Thomas things when he is feeling well too but when he is ill, it is really all he wants (apart from blankie of course!)
So, a day out at The Bluebell Railway Thomas Day Out is William's dream come true! We told him he we were taking him to The Island Of Sodor and he really believes that he has been there today. We saw Thomas and Percy, Diesel and the Troublesome Trucks. Stepney is resident at The Bluebell Railway as, of course, he is the Bluebell Engine so we saw him and had a ride on a train he was pulling. William is now a proud member of the Stepney Club so we will be having a good few trips to the Bluebell Railway for club specials in the years to come. We said hello to Thomas and climbed in with his driver to blow his whistle. We watched Thomas and Percy arrive at the station and then watched Percy shunt the naughty Troublesome Trucks around. We also saw another resident engine, Fenchurch. He is not a Thomas engine but William adopted him as one (he had a face afterall) and was thrilled to ride on carriages he was pulling. Other engines had faces on to look like characters so we also saw Henry, Donald and Murdoch. The Fat Controller was also around to say hello to the children (although he seemed to have lost a bit of weight!) All in all, it was a fantastic day, despite the rain, and made for very excited children, especially Wills.
We were wondering if we would make it at all today as it has been a bit of an eventful week for Wills. He has started draining really nasty liquid from his jejenal tube. Most of it is faecel matter that should be draining elsewhere but is not doing so very effectively at the moment. This may be due to adhesions or partial obstruction caused by infections or may just be because his intestines have slowed down so much. Either way, it is now time for Wills to have surgery to sort things out and make him more comfortable. This is still a tricky balance and William's surgeon is still hopeful he may be a suitable candidate for a transplant at some time, unless it is confirmed that his underlying condition is progressive. In any case, things change and the contraindications for transplant may alter as more research is done and more successful transplants carried out. So, even if he is ruled out now, he may be included again in the future. This is tricky because surgery that could be done to make him more comfortable now may hinder the success of fa uture transplant. It is very hard to decide what is best for him when we really are working in the dark with no clear diagnosis. There are a couple of options for surgery now. One is a staight forward illeostomy, the least risky but may not be the most effective for Wills. Another is to make a higher stoma. This would drain very well but would mean there would be very little remaining small bowel, making him "short gut" and so, writing off any function that may remain in his small bowel. William will have some further x-rays and barium studies over the next few weeks before a discussion with his consultant and surgeon to decide what to do. In the meantime, we are draining all the nasty stuff through two drains, from his jejenum and stomach.
William has been struggling with the heat so is back on 20 hours TPN with only 4 hours free from a 2 ft long drip tube. This is very hard for him as he wants to be active like other children, even if it is in his own wobbly way! We are hoping he will sooon get a powered wheelchair to give him more independence with he is on his line, and when he is too tired and wobbly to walk.
We had just got back from the day at the hospital on Friday when Wills spiked a high temperature, making the trip to see Thomas look very unlikely. Luckily, it seems that was due to dehydration (before going back to 20 hours on the TPN) and, perhaps, a normal virus.
Hope had her birthday last week and enjoyed a very girly sleep over. I really didn't have much to do with it - apart fomr providing the tea, Mum really needs to keep at arms length from her and her friends girly sleep over behaviour now! It is sad really, Hope and Ellie have missed a lot of Mummy time since William was born. Hope has had most of her parties, and was 8 when William was born so growing out of big parties. Wills was born the day after Ellie'e 5th birthday so she missed out that year. We have managed to do something for her each year but it has always been around what has been going on and, usually, with Wills and I in hospital. She has had a couple of birthdays hauling her presents up to open on the ward. This year, she is having an early party next weekend so her friends can all come before the term ends and to make sure she has one before Wills goes in for any surgery that may get scheduled during the summer. We looked at a party catelogue and she really has grown out of the fairy parties etc. That is a bit sad really as I fancied one more pink and pretty party. We are going for Pirates of the Carribean and are really going to town on it with treasure hunts and palm trees and a lovely Elizabeth wedding dress for Ellie to wear. Next year, she wants a sleep over too so it looks like this will be the swan song for home made childrens birthday parties for the girls. Once again, we are keeping everything crossed that Wills stays well and home for another week.