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.