Friday 18th may - the big room!

So Harry arrived around 9 am on Wednesday 16th may back at LGI. having received a phone call from the ward on our journey I knew to go straight to ward 32 and that Harry would have THE BIG ROOM! That was a relief! So we were shown to our room where Harry's name had been cut out and laminated and blue tacked to the wall in preparation, plus a sticker chart, which has 3 weeks on it and at the end Harry gets a prize! So we knew that we were in the right room! It was lovely to see that it had been personalised for Harry, but at the same time it made it real that Harry was in for the long haul and not a few days! As Harry has a green snotty nose, then is was apparrent that Harry would immediately be isolated, due to fear for spreading his germs to other immune suppressed kids. That meant the playroom was out of bounds for Harry. This was a real shame as I was hoping that Harry would get a few more days with more freedom, prior to his immune system crashing. A swab of his snot has been taken and it was confirmed that he has rhino virus - common cold to you and me! HOwever it is unlikely that he will come out of being isolated now! Harry has been good about returning to hospital. Admittedly he has had the odd wobble about coming back, but he knows he needs to be here to get better for good. (feel a Take That song coming on entitled - Back for Good!). Harry spent a lot of the first day making Lego models. He is getting addicted to Lego. He puts so much concentration into making it! Then he was playing with the refuse truck, which also breaks easily and I find the putting back together bit is very tedious! However, Harry is entertained. He is hooked up by lunch time on Wednesday to a trolley and drips, which he will remain permanent attached to till next when, when his chemo is finished and his stem cell transplant begins. Harry is having chemotherapy pumped into him every 6 hours and each lot lasts 2 hours. He has 4 courses in 24 hours. He is also on a permanent hydration fluid to protect his kidneys from getting damaged. This comes in 500 ml bags and he has this changed about every 5 hours. In between he has medicines to take, to counteract the side effects of the chemo drugs, then he has regular observations too! Therefore not much time goes by in a 24 hour period, whereby a nurse is not doing something regarding Harry! On the first morning I have a shower in our ensuite wet room, feeling rather pleased with the facilities, only to realise that actually no water was draining away, thus creating a shallow bath and yes water flooded into Harry,s bedroom! The drainage is so poor on these wards and the slope to the drain, practically horizontal. A Very poor design!Since the room is not supposed to be "contaminated" the machine that sucks up water could not be used, so around 20 towels later the floor was dry and useable again! We are still waiting for maintenance to come and take a look, so until then the ensuite shower is out of bounds! Harry had his friend Adam visit yesterday and they played really well for 3 hours with the paymobil and Lego. this was really good for Harry, particularly as he is isolated. He did get tearful at times, as he is hooked up to his trolley of medicines permanently and wanted to be detached from them, so he could play more freely. Really, prisoners have more freedom than children or adults when attached to machines for various medicines and what bad things have they ever done - none! So the boys had a really good afternoon. I would like to thank Kaye for having Sophie on Thurs afternoon, as although Sophie would have been welcomed, it enable the boys to play freely and Adam to stay longer! Harry also had a McDonald 's for lunch and the toy was a cress planter. Having had a McDonald's again today too, he will soon have a cress farm! Harry has taken to talking to his cress and has even played it music and sang it a song! Today, daddy visited with Granny and grandad. Harry was making more Lego with them - a space shuttle! He is into space at the moment and his play worker Janie has introduced him to Q Pootle 5, whom has a moon party! Today his friend James visited. Since Harry can not go onto the ward with the playroom, I asked if we could go for a walk down the corridors. This was granted and so Harry took James on a tour of LGI! Not every kid gets that! such excitement here with the Buckley's. We came back in time for Harry's chemo to commence and isolation began again! Again, Harry really appreciated having visitors and distractions to being " chained" up to a machine. We have also used Skype to talk to daddy and Callum at home, which has been successful. Tomorrow daddy comes to stay with Harry for 3 nights and I get to go home and see my lovely Callum! I hear that he has been really good for daddy, let's hope he stays that way for mummy! He is so funny though at times and adores playing with playmobil figures. He was having a right conversation the other day with the mummy and little girl on her bike. Mummy said to child, "do not swing on your bike", child says, "why", mummy says, "because you will fall and hurt yourself!". He gets the whole cause and effect thing, but chooses to ignore it in every day life, most of the time! Well, the next leg of Harry's journey has begun, which feels good to be a step further on. tuesday was not a good day, anticipating the return to LGI. Now we are here, we just have to keep our heads down and plough through the next few weeks and pray that harry is not too poorly and bounces back quickly. Au Revoir for now!