Sunday, 2 September 2012

2.9.12 the light of hope has faded again!

Harry was so much brighter and engaging and fun the last 2 days! He had a visit from his friend James yesterday and his mummy Jenny and we showed them the roof top garden. However, as our lives seem to be these days, Harry spiked a temperature at tea time. He had his bloods taken from his line to test if an infection was present.
Overnight things have not been good. Harry had diahrroea with blood in twice. He had a continued temperature too. His bloods were taken again and a full blood count taken. Whilst waiting for the results he was seen by 2 doctors. It is found that his platelet level was low and since these cause clotting they are very much needed if blood is coming out of his bowel. Therefore, Harry receives a platelet transfusion at 4 am. Having just drifted back to sleep and those wandering thoughts that something sinister was going on had been finally pushed to the back of my mind, well the nurse woke me at 4 to get me to clarify Harry's date of birtWh, which I have to do before any transRfusion. Don't know what they do if a parent happens not to be staying! Not impressed by the disturbance, I manage to fall back to sleep, but again was rudely awoken at 7.30 am with the information that Harry had to have an x ray in A and E at the far end of the hospital! I quickly dress abd accompany him!
Harry was really co operative and it all went smoothly and by 8.15 we were back in his room.

Well it took ages to get the x ray results analysed and I went home to have lunch and put some washing on to be able to take some clothes back again, then I picked Callum up from Kate's where he was having great fun, with a hose and a paddling pool. His favourite past time! He quickly became soaked and was promptly stripped to his underpants! These soon got removed too, as did his little friend Finley's! Two naked little boys having lots of fun!
I take Callum down to see Harry in hospital, where his dad has been keeping him company abd Janey was visiting too.
Thankfully nothing was apparent from the x ray and the bleeding had been concluded as being down to having low platelets. Harry has also had a red blood trabsfusion too today. His temperature has remained 39.something degrees C and topped 40.2 at bedtime. The calpol isn't touching it, do they may try giving this intravenously on his next dose.
Harry has been able to engage today and smile! But this is all another set back!
I had said to Harry yesterday that he could attend hospital school next week, but this is not possible either, as he is now isolated in his own room. I think we may be able to get a teacher to come and see him in his room for a handful of hours fingers crossed!
He was looking forward to going up to the school room, so another thing postponed!
It's also looking like there's not much chance if him going to the circus on Friday either.
The light there yesterday and the hope if some fun and normality has been delayed further!
We knew Harry had to stay in a few days for the intravenous feed to take effect, but at least we had hoped he would have been brighter and as said interact with others in the school room! Patience I know is a virtue and one we have to keep hold of, but it is being tested to the Nth degree!
Good job I emailed centre parcs before paying the extra £80 onto our existing payment that we had made for our January holiday, to ensure that we could have the possibility of changing the dates for our rescheduled November break. I had thought I was just emailing and haggling in the unlikely case we couldn't go and haggling it was! We can now change the dates up to 4 weeks before our break starts. As Harry's next stage of treatment has been delayed we don't know if his week in hospital for immunotherapy will clash with centre parcs. Another possible blow.
I can't tell you how having nothing to look forward to is. I know many people in the world don't go on outings or have holidays, but my peers do and I guess I just want something else other than cancer to talk about. We are not able to do anything nice at the moment and I know all I do us talk about
Harry, slag off the system and the unhelpful workers I come across. I want to be fun me again. Those people who I rant to, thanks for listening! The days are long in hospital abd there us much time to dwell in things. Ultimately I am trying to get the best for Harry, with his schooling and medical treatment. Unfortunately in this day of underfunding of adequate services in both health and education and from dealing with people who are in the wrong profession, this sometimes means I am constantly battling against a severely under resourced system. My community nurse whom I spoke of the other day had no hesitation in telling me there are no funds to assess outside the decision support tool criteria for continuing care. I have since challenged this a second time having re read the national 
framework again. Arguments outside of the intitial criteria can be made if well argued. Harry does have unstable, unpredictable and complex health needs. Having had another discussion with my community nurse to ensure she knew that Harry had been readmitted to hospital and was on 
intravenous food and fluid and also having suggested I speak to her manager, she asked a continuing care colleague to speak to me. Having spoken to this colleague I now feel that Harry will have a fair assessment regards applying for continuing care. He will be assessed and all being well make funding panel at the end of September for a decision. This colleague happened to have a much better approach than the community nurse, so I felt listened to and that the framework was going to be followed. It may be that Harry doesn't get funding, but through going through the  official process we will get a thorough assessment and feedback after the final decision has been made! So I fair crack at the whip so to speak! I also tackled the community nurse with regards the impromptu reassessment of Harry's nursing needs. That notice would have been good. The nurse failed to see my point and suggested we end the conversation when she could hear Harry calling for me in the background! This of course I had no intention if doing until I had said what I needed. From her tone she still didn't get it and had no no intention of apologising. Sorry  can go a very long way!

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