Thursday, 1 December 2011


Well by 8.30am I think normality had set in and Callum and Harry were fighting and it continued all day, thus the thought of how long is it till bed time, frequently popped into my mind today! I was not under any illusion that being home would be easy and I was not wrong there! We had the Mcmillan nurse and another children's nurse visit this am. Harry has to have an injection in his leg for 7 out of each 10 day cycle and he hates having this done, thus I don't want to administer this, so a nurse will come in each morning and do this. We are doing the feed and administering all medication down his NG tube and for each medication you have to withdraw some of his stomach fluid using a syringe, test the ph level of this, put the medication down the tube, then flush the tube with a syringe of cooled boiling water, so a little bit of an effort.
Well the idea of having a family day did not really happen. Both boys were competing for our attentions as expected. When Harry was in hospital he had one of us to himself 24/7 and when Callum was at home he had the attentions of us or granny and grandad, or grandma and grandad, plus some other people! However, callum did not have to share his toys when at home, therefore I think that led to the big clash today. Although in normal circumstances there are always good and bad days. It was also not helped by Harry feeling very fragile, he was tired and seemed to have aches and pains today. I think not surprising after the recent chemo.
Therefore we did end up going to granny grandads, as both were requesting to go, it seemed it may help today. However, they fought there too! Paul was helping Grandad put the finishing nuts and bolts to the bunk beds recently purchased. Which do look fab.
I think I was not in good spirits and not good company, so sorry Granny and grandad.
Paul had to come home to wait in for a delivery of equipment for Harry, mainly feed stuff. The delivery was expected at 3.30pm, but in usual courier style it did not turn up till 5.30pm! Thus we could have gone out this afternoon! When it arrived there was 8 boxes of stuff. Good job Paul felt in the spirit to re arrange our kitchen cupboards to create space!
We were also waiting for some pain relief medication that was missed off Harry's prescription yesterday. Our Mcmillan nurse was kindly picking this up from LGI after a fax to the G.P. for a prescription seemed to go wrong as the wrong medication was ordered. This arrived at 7pm, so glad we have this as did give his second and last dose we were given from the hospital this eve. Not that I want to use it, as it will no doubt cause Harry to have constipation again!
I am glad we are all home, but on the other hand can't wait for Callum to be in nursery tomorrow, which I feel guilty about, but Harry is so demanding at times it will be nice just having him at home and helping him to settle back into being at home.
I also fear how much Harry's tiredness is from lack of sleep or whether he is anaemic and needs a blood transfusion, which means a trip to LGI, but only as an outpatient. I will discuss with the nurse visiting tomorrow and see how Harry is faring.
Perhaps being at home the realization that life will be very precarious for a while has hit home.
I think we need some time out, but need Harry to be in better spirits to leave, as he has been very clingy again today and would not even let granny push him in his pushchair today. We also need to follow up the possibility of a wheelchair for him, as the pushchair is just too small!
So lots of things to follow up tomorrow and as I seem to be saying frequently at the moment tomorrow is another day!!!!

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