Tuesday, March 13, 2007

We're back!!!

Hi everyone! We are finally back from hospital and back online! It has been a hard couple of months. Once again, the girls have been away from home at Grandma and Grandads. It was great to have them back again on Friday. It has been a great stress on us all. Although we are home now, which is fantastic, we know that this year will bring further hospital stays. William's health has deteriorated over the winter. Of course, this may just be due a bad winter and he may bounce back. However, it has been decided that now is the time to start thinking about whether or not he may benefit from an intestinal transplant. He has now been referred to Birmingham Children's Hospital for assessment and for advice on the best surgical intervention, such as an illeostomy, to help make him more comfortable in the mean time. William is getting a lot of infections due to the stagment fluid that sits in his intestines. One such infection is pseudomonas aueriginosa, a nasty bug that used to colonise his lungs. Unfortunately, this bug has returned in his intestines, around his gastrostomy and, once again, in his lungs. He is on IV antibiotics at home at the moment and will start antibiotic (colomycin) nebulisers later in the week. We are also having to restart his chest physio. He is back on a lot of the treatment he used to have when his diagnosis was "probably cystic fibrosis" as well as the TPN and IV medications for his intestinal failure. We have calculated that all this will take about 3 hours a day.

With all the extra care, breaks like those we get at the hospice will be even more valued. We were there this weekend (where William enjoyed the swing). The main reason for our stay was to attend the reception for the marathon runners held at the nearby Losely House. It was a fantastic day. The girls had their face painted and enjoyed playing and painting with William. We had a fantastic three course meal and wine (Hope was most cross as she was given sausage, chips and beans with the other children) and many official photos were taken for local newspapers and for team shots etc. It was a really exciting day and the marathon seems so much more real now. I was relieved to share training stories with other first time runners and learn that I am ahead of most in my training mileage. I was asked to share a little about why I am running for CHASE with the other runners. With all that has been going on so far this year, I suddenly felt very emotional looking out to see all those people (54 runners plus familes and CHASE staff) and felt I was talking in a very squeaky voice with a huge lump in my throat. As many people know, I can talk and talk but wasn't able to say an awful lot. Still, one lady did tell me afterwards how moved she was and how she was going to work harder with her fundraising. All the runners will know why children are referred to CHASE and I think seeing William attached to his TPN in his chair during the morning and then running around in his unique wobbly way would have spoken much loader than any of the words I had to say. The CHASE marathon team has been going for 10 years now and are just £7000 away from having raised 1 million pounds. The 2007 team will reach that milestone which is absolutely amazing. I know many people who read this blog have already sponsored me - thank-you so much! If you haven't done so, please do help us reach the magic million pound mark by clicking on the link to the right of this page.


Shadow said...

So glad to see you're all back together at home again. I'm sure William will make an astounding bounce back over the summer and hospital stays will be minimal!!!!!

Good luck with the continued training.

Thinking of you all, love and hugs. xxxxxxxxxx

Anonymous said...

Hi Sarah, I remember you and little William from the CF Forum and wanted to say hi. My little boy (wcf) is about the same age I think. Have thought about you often, and hoped that William was getting better. Sorry to read that things have been so tough. I hope you get a well deserved long break at home with your lovely family now. Best wishes, Perdita x