You never know what life will throw at you! In 2004, my stable life with two healthy daughters was rocked to the core when I gave birth to William, a little boy with complex needs. Life was never the same again. We've come through living in hospitals, a small bowel transplant and coming to terms with Asperger's Syndrome and I'm finding life all the richer for it.
Wednesday, December 06, 2006
What a difference a week makes!
This is what William looked like a week ago - very pale and poorly and "panda eyed". One week on and, thanks to strong IV antibiotics and a blood transfusion, William is once again bouncing and happy. We kicked off his very busy Christmas social life yesterday when we were back to Rupert Bear Ward but this time to meet members of the Crystal Palace football team rather than for more treatment. William has been at home in isolation since last Thursday due to low white cell counts, signalling an immune system weakened by his infections. We had the all clear in time for the special visitors and William was very pleased to be back on his beloved tram and bus. He enjoyed meeting the "foibaers". Just as well because he is going to be a club mascot with Ellie at some time later in the season. Football clubs do an awful lot to help children like Wills. This is the second time he has met a football team as he met Chelsea at Chelsea and Westminster last year. The idea of him being a mascot at Crystal Palace is a lovely one as such special occasions ar fun for William and, more importantly at the moment, for Hope and Ellie as they treasure these special memories (as do I). We will wait until he is a little older but it is a difficult balance sometimes as weeks like last week serve as horrible reminders as to how sick William can be and how every day is a precious one.
It seems that the infection William had was caused by sedation given to him as a syrup into his tube at GOSH. His intestines do not move so this then sits around and ferments, resulting in painful gassy build up and explosive nappies. The fermenting sugar becomes a breeding ground for gut bugs which build up so much that they escape into the blood stream and into his hickman line, causing septacemia. We just have to keep our fingers crossed that the bugs are killed, rather than dormant, and that they won't come back when his IV antibiotics finish on Sunday.
With William safely home, we launched into the Christmas season on Friday. We are all keen to make the best of it this year as William is home. Of course, things can change very quicky so we are making the most of every day in Advent so we have at least made the most of what we have if William does end up poorly again later in December. So, the decorations are up and glitter is all over the dining room floor. Gingerbread has been baked and is on the tree. On Saturday, Hope and Ellie treated us to a nativity play. Ellie had one of those moments every little girl dreams of at the end of last week when she was told she is to be Mary in the school nativity. We are looking forward to that and, judging by her performance when the Angel Gabriel visited her in her play with Hope, she will be a fantastic Mary. William will make his nativity play debut as a shephard on Christmas morning. The other little children are angels but the sunday school leader rightly felt that a shephard costume may be easier around his TPN lines and "darlie dair".
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3 comments:
Aww bless him, I want to huggle him up tight, poor love. At least he's up and at 'em again now!! Fingers crossed the abs zap those nasty bugs.
Sounds like you're all keeping super-busy in the run up to xmas. Have a wonderful time enjoying all of the fun!
Love and hugs
xxxxxxxx
Awww, well done William on getting better so quickly. Really hope that the iv's have got rid of the bugs, and not just settled them down.
Hope you all have a really lovely Christmas, with no illnesses!
Big hugs,
Becky, Seren & Dylan xxx
Hello there! Just proving that I read your blog! Poor William, with that awful photo of him floating around in Cyberspace. He's unlikely to attract any interest from any eligible 2 year olds with that look. Apologies that Daddy's away tonight, forced by the vagaries of South-Eastern trains into staying over at work. Enjoy it while you can - I'll be back again at the weekend, scoffing at all those TV programmes you like to watch when I'm not there...! xxxx
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