Tuesday, May 22, 2007
Catch-up time again
It has been a hectic week, hence the lack of blogging. I have also put very few pictures up lately so here are a few taken over the last few weeks. I still have not had a chance to get my own laptop fixed and am using my work one. I couldn't rotate pictures today (no software on this) so these are just a selection. They were taken at the hospice a few weeks ago and the cold, damp ones are William and Ellie while we were marshalling and watching Hope at the Race for Life. Hope's picture is not up as it needs rotating. Ellie and Wills had a great time playing with cow parsley (making me sneeze). Some of the hospice pictures show one of William's recent discoveries, preparing his meals on a play kitchen and then sitting down with us to "eat". He loves to take part, in the same way a boy likes a steering wheel at the back of a car. If you give him real food to play with, he recoils away from it but really loves playing with pretend food. It is a nice way for him to join in at family meal times.
Well, the last blog followed our flood and William's tube coming out. William's new tube was put in today. We did go in for it on Friday but an emergency took up the staff and the room so we went home without it. It was a very unpleasant and frightening experience for Wills. He had to lie on a table in a room a bit like an operating theatre with a live feed X-ray machine just inches above his tummy. There were about 6 people with gowns and lead aprons around him, passing equipment etc. The procedure itself took about an hour and all the time he had to lie really still while guide wires and tubes were passed through his stomach into the opening of the small bowel below. Grant, the gastro nurse specialist, and I tried to keep him happy with Thomas stories and music on Grant's phone. When it all got a bit much, I promised him a choice of new engine as I felt he deserved a treat for being so good and brave. He asked for Edward and we talked about the games he could play with him when he got home. This procedure should have been done under sedation but oral sedation doesn't work for Wills as he can't absorb it and they would rather only use general anaesthetic where it is really necessary as it causes chest infections for Wills. William is very forgiving though and soon forgets what he has been through (but certainly did not forget the promised Edward and carried it home proudly).
Yesterday, we had a multidisciplinary meeting where all William's therapists and nurses etc, and I, met to talk about what we are all doing with him and what the goals for the next 6 months will be. It was good for everyone to meet each other. So many people are involved in Wills now. Of course, there are lots of things to sort over the next 6 months. Nutrition needs reviewing as William has not grown much and lacks energy. We are going to do 48 hours of fluid balance charts and blood glucose checks in a couple of weeks to see if he needs more calories, fluid or even longer on TPN during the day to maintain his energy and fluid levels. He only gets 6 hours off the drip as it is so I hope he doesn't need to stay on longer. We will see. The other priority for the next few weeks is to stabalise his posture more, so he needs a new, more supportive seating system and wheelchair. He will also get foot and ankle splints. When he starts school and needs finer motor control, he will also get hand splints for fine work as his fingers are hyperflexible and bend back.
Meanwhile, Hope and Ellie are well and happy. Hope got back from Guide camp in time for a week of SATS, which she said she enjoyed! They held auditions for the end of year production, something Hope is very excited about. Now, she is off on school journey for a week and then off to Dads and Granny (Dad's mum) next week, with Ellie as well. A very busy time for her. Ellie is like a fish out of water this week. Honestly, they fight like cat and dog and then she wonders around like a lost puppy when Hope is away, saying all the time how much she misses her. Talk about can't live with and can't live without!