Fun (and problems) in the Sun

With Hope and Ellie's school closing on Thursday and Friday for polling and an inset day, we took the opportunity to take our first residential stay at the CHASE hospice - Christopher's. We had a really fab time and were so lucky with the weather (although the poor William was not so lucky in the heat! I'll come back to that later). The biggest hit of was the trampoline. We were the only family staying, the others were children in respite with their parents away, so Hope and Ellie had it all to themselves.

And William enjoyed it too once he plucked up the courage. OK, so the children weren't the only ones and I am a huge kid too!!! I was offered an aromatherapy massage and never really had the space for it as this stay was very busy with all I had to explain and show them about William. I reckon that a good old jump on the trampoline was actually a much better de-stressor!

It was great to jump on there with the girls and enjoy a really happy time playing games with them knowing that someone else was taking care of Wiliam. Even more wonderful were the two undisturbed nights of sleep. The children needing the care sleep downstairs while the families stay in a flat above. All meals are provided and everyone eats together, children, families and all staff. It is a lovely, supportive community. During the day, the children have a one-to-one nurse or carer. They take care of them, play with them, make sure all their clothes are washed, every little thing. They also look after the families. I was so impressed with how the staff could read the situation and join in with the fun one minute and offer a supportive ear another. I was having a moment with a coffee in a peaceful bit of the garden while all the children were playing on the last morning. This bit of the garden is pretty near to the "special bedrooms" for children right at the end. William was playing with Paul and after a while, the nurse came over to turn on the fountain for me and stayed for a chat about the more emotional side of things. I really felt that I could pour it all out. It is good to know that we will be able to come and have fun here, rest and maybe leave William from time to time so Paul and I can enjoy an evening out or a weekend away. It is also good that we will build relationships with people so if the time comes that we do have to say goodbye to William we will be able to do so in a place with lots of happy memories with people who know us and will share some of those memories.

There is so much more I could say about the soft play room, the art room, the pool, the music corner, the sensory room... There really is so much there to help children who may well not live into adulthood, and their families, to live their life to the full. On Tuesday, William and I will go to 'little Chasers' a pre-school group for the youngest children cared for by CHASE. I am looking forward to this and meeting other Mums who go through similar things as me.

So we all enjoyed the lovely taste of Summer, well mainly. William had a great time initially but began to get a high temperature and get very listless while he was running around on his TPN break. We were worried and feared he may have been getting a line infection. As soon as he was back on TPN he settled down. He usually wees for England once back on but didn't wee much for 6 hours, even with 110 mls per hour going in. The next morning, the nurse and I realised that he was dehydrated with all the running around, still leaking his usual yellow and green yuk from his gastrostomy and into his nappy and getting sweaty in the heat at a time when he is not getting any fluid. He has always been a very sweaty little thing in the heat. On the advice of the nurse, I called the team and Chelsea and Westminster who felt that William was getting heat exhaustion. So, now he is back on TPN 20 hours a day with only a 4 hour break to give him a shorter time with no fluid. We will review this at clinic on Friday.