Sunday 18 December 2011

18th december

Harry is back in hospital for his chemo treatment today. He did not have a good night and had a nose bleed at one point so I was thinking he may be anaemic as this is one signal. He was also very grumpy and lethargic this am, so was relieved we would be seeing the medics and having his bloods done. Anyhow sure enough his blood count is 6. Something, so quite low, thus having a blood transfusion prior to his chemo starting. This means that the chemo starts later than anticipated about 5pm as a transfusion takes about 3 hours to go into his system. Looks like another evening discharge and I won't make my ladies night out in Otley! Will see, but Harry comes first. Will just have to paint the town red in Jan, an excuse for another night out, I'm sure the ladies won't need much persuading!!!!
Looking back on the last week, Harry had a fab start, mon, tues and wed, he was great and on top form, but thurs, onwards his energy levels were dipping, and no doubt a correlation to his blood count slowly dipping. Probably accounts for the ducks fiasco on Fri, though not for Callum! That was just Callum being Callum!!! But Harry seems to feel very vulnerable when his blood count goes down and just wants me! On the sat he wanted to come into town with me, but when it came to leaving the house he did not want to go. This is probably due to his blood count going down, as his brain said he wanted to go, but he did not have the energy levels to follow through.
Oh well, hopefully the transfusion will give him the energy he much needs, to survive Christmas.
I do need to find out his platelet count prior to leaving LGI, so I know whether a community nurse can re pass his NG tube if it comes out or whether the levels are too low and thus a trip to LGI, if the inevitable happens, which no doubt it will. Have not gone a week without it needing to be repassed, but can keep our fingers crossed. Ward 76 has an open door policy over Christmas, so we are thankful for that. How they manage that I have no idea!!!!!
Well since Callum has had chicken pox, Harry has had to be in an isolated room for this stay, in case he is a carrier of the virus, plus point is a room on our own with own toilet and sink, no shower or bath though, so not quite hotel like. Still liked that room on ward 51 that we started out in, that had its own bath!!!!
However, Harry cannot go and join in with activities in the playroom, or go out on the corridor. The room is not that big really. It is a room that we would get when Harry has his stem cell therapy round about Easter time, if he meets his milestones as anticipated. I told Paul that this is a possible room that Harry would be in for 4 - 5 weeks, and he could not go out of the room for that period!!!!! Paul, had not realised this fact in its entirerity!!!! The thought of entertaining Harry and keeping his spirits up for that length of time, without his behaviour dropping dramatically is going to take some thoughtful planning!!!!
Hence, having realised that Grandma and Grandad had bought the same toy as us for Harry for Christmas, a lego police unit, we took ours back and exchanged it for a fire station, put away either for his birthday or if needed, for his period of isolation. Not that we want to spoil him, I am truly aware of this issue, but he has to have stuff to keep his brain active and play with!!!!!  At least being 4 he is not aware of the cost of things and his brother being 2 even less aware, hence there is no you got such and such and I haven't!!!!!
Oh well, a few months to go before then, getting carried away with myself!!!!
I am at home tonight and Paul is staying with Harry, my turn tomoroow night. Paul is back at work Tues, but at least on a flexible basis, for now!
I have wrapped presents all night - the joys of Christmas! And am ready for bed!
I have asked for an i tunes gift voucher from my sister for Christmas, to add tunes to my fab new mobile. I am so in love with the song Starlight - by Matt Cardle and will definately download this. Was not that keen on him in x factor, but this song has that feel good factor anyhow!!!!!

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