Today didn't go according to plan. Yesterday lulled us into a false sense of security!!! Harry's NG tube came out when he was sick at 5am this am, so our hearts sank! Though, I had thought that the community nurse could put it back in when they visited at 3.30pm to do Harry's injection, however following conversations with them this morning it turned out that his blood results from 5.12.11 showed that his platelet count was below a certain range for the community nurses to carry out the procedure without risks in our home. Hence, a trip to LGI, whereby he had bloods done and his platelet count tested, having waited for the results his count was fine and no transfusion needed, so they could do the NG refit. The trouble was, they were so busy and with only one nurse on, so I believed, we were there about 4 hours! The refit was traumatic again, and Harry puts his hands on his face, so you have to restrain him. One of the hardest processes to go through. Anyhow at least it was down on the first attempt. We then came home and Harry had his injection from the nurse in his leg, to increase his white blood cell count to reduce the risk of infection. He was actually much calmer than previous visits, so that was a relief.
At least we still got to spend an hour with Isabelle across the road and Harry helped me decorate our tree. When decorating the tree, Harry got so excited and said that 'he loves Christmas'. It is lovely to see that excitement as it is the first Christmas that he has really taken an interest, properly. That he gets the whole thing.
Also thanks to Val making a stew, we did not have to worry today about preparing a meal, so we could fit everything in, that we wanted to do!
Harry has been playing on his DS today. He particularly likes the camera on it and snaps everything, particularly random things like the carpet and toys! He has also discovered that you can record your voice too and then distort it on playback, with various options. He was also playing a bit of mario brothers and I can not believe how quickly he figures it all out, cos I haven't read the instructions and his dad has not spent much time showing him, yet he manages to press the right buttons! He was playing on the hospital's DS the other day and borrowed super mario Kart. I thought he'd never manage it, but when I looked over he came 5th out of 8 cars, so not bad!!! He saw the playstation at the day clinic today and that had been loaded with super mario Kart and he just started playing that. Technology to them is nothing so it seems. He's not really been allowed to do much previously, so its interesting to see. As long as he has a mixture of interests, then I think the DS will be brilliant for him in hospital. If he can master the photography side too, then we can upload pictures onto the home computer and print them out.
I guess life will be difficult to plan for the forseeable future. It was great seeing friends yesterday, when Harry was so well and we made the most of the day. Harry has actually been in good spirits today, it was just the fact that we had to go through procedure and spend so much time at LGI today. Yesterday, I thought, could I get back to work, then today I think with the stresses that the precarious blood counts present and Harry's 'bloody' NG tube - I think not at present. Harry is hardly eating, so the NG tube is necessary to give him the calories he needs. We are very, very gratefull to Paul's work for providing him with the space needed to deal with this situation, which has greatly impacted on our lives and enabling Paul to be fully supportive, to us all in such difficult times, without having to worry about work. He wants to get back to work as I do and on a flexible basis he will be back in next week.
So we shall see what tomorrow holds. Hopefully, I can pop into work and Harry can be looked after by Granny and Grandad for a couple of hours without hiccups and I can go supermarket shopping - Yay, the joys!!!!!!!!