So we have reached the middle of the week! Harry will hopefully be discharged from LGI in the morning, that's the plan and should happen, but never count on it totally! Some normality, Harry and Callum can be reunited and hopefully a trip to the park so the boys can see their friends.
Harry has perked up alot as of yesterday afternoon.
He walked/ran to the nuclear cardiology department for his second MIBG scan(first yesterday), whereby he has to lie very still and the machine comes to about a cm from his nose. I set up Peppa Pig on his DVD, which he can't see, but listens to on his headphones. He wobbled a bit towards the end and when his head slowly slid out of the end as the pictures continued to be taken of the rest of his body, I repositioned the DVD player so he could see it. Slowly the rest of his body came through the machine and job done!
The powers of Peppa Pig continue to bemuse me, however still grip both my boys. This morning I managed to get Callum to eat his breakfast and get dressed reasonable effortlessly in front of Peppa Pig, then as said, she helps Harry through a big scan. personally I think Peppa needs a good talking to and a day on the naughty step wouldn't be enough, but i can't deny her powers!
Harry needed a wheelchair for the ride back to the ward as he was worn out! He has had little exercise recently due to being poorly. A porter came up and pushed him back to ward76. He looked like a little Emperor being driven in his chariot!
So last test is the bone marrow aspirate on Friday,may everyone pray that, that one is clear, as if not he needs more chemo. This 6 weeks has been very hard and so to go through another 6 weeks would be even harder as each round of chemo knocks him down more and recovery is slower. Each day this week it has been 'what are the scores on the doors George Dawes' with regards his blood test results. Oh how important they are. Harry has bed hovering around the transfusion point for his HB, however today it has increased naturally to acceptable levels. Yay!
He is also no longer neutropenic and his white blood cells have come up to acceptable levels. The GCSF injection helps increase these and is continued to be needed until his neutrophils come up to above 2.5, currently at 1.3, but rising. They were 0.03 on Saturday! Probably all a bit technical, but such vital stats to us these days!
So onto service provision! I awoke Monday feeling ok and thinking that our Playworker could come onto the ward instead of seeing us at home. I was pleased thinking that Harry would have some input from someone else. However not to be. After several texts/phone calls and eventually a phone call from the service manager I am told the workers can only see Harry at home. I found this difficult to grasp as thought the hours were attached to Harry not where he was. This is not the case. I felt pleased when the service was set up, 2 playworkers visiting fortnightly to give overall a visit a week. One was to do more pre school work with Harry. I had not realised that the service was community based and thus does not cross over when your child becomes an in patient. Just like the district nurses only see Harry at home, these playworkers come under the same umbrella. So I felt cheated to have invested time setting these services upto find that when Harry is in hospital he cannot access them. Since hospital admissions have been frequent recently and a 6 week stay fingers crossed on the horizon I felt let down.
HavIng emailed both my McMillan nurse and social worker I understand clearly why the cross over doesn't happen, but what about continuity for a patient. What happened to integrated services. The need for district nurses ends on admission, but one of the workers was designated to do pre school work with Harry, this need does not end on admission. Unfortunately education in hospital only commences when a child is of school age, which is in Septdmber, but in the mean time Harry is missing out on 15 hours pre school education a week. To get a couple of hours a week in and out of hospital would be great.
So the system is budget and department led, not needs led as always, when will this change? Integration of services is on the agenda for the future and how far wil it go I wonder?
I have now emailed education Leeds and will hopefully speak to someone tomorrow. So I am the relative that all professionals hate, pushy, speaking the loudest, pestering, but only to get the best service for my Harry. Everyone thinks I am banging my head against a brick wall and have never heard of Leeds education giving direct payments fur me to purchase a worker or for them to supply a worker. The only thing my social worker says they do is pay a nursery the grant. She says my nursery should provide input to Harry for the £131 a week they still get to keep the place open. I can't see them being able to do that,but will pursue and as always I will do the leg work.
Routine and structure I thought was the key to a child's behaviour and well being, well that ain't happening and no one seems to want to help me get that in place, or their hands are tied to do so. Systems, always bloody systems.
So, since I am on the receiving end of service provision I can quite easily say it is shit! Providing them is a much better place to be, which is where I am when working. I now know how frustrating the system is. I now feel so much for all those people out there who don't meet the criterua for a service, or whereby they have too much money to receive one. It is a very lonely place fighting on your own. When energy is needed to care for Harry, little is left over. I know how many people feel out there now!
Also, how hard it is to take information on board and understand the service provision. When we provide on a regular basis it is very easy to make assumptions about what the person has understood, or as we live and breath the stuff, easy to simplify the explanations, leaving gaps for assumptions to be made by the service user. I can appreciate a hell of a lot more why someone may ring 3 or 4 times to be given the same information. When in the middle of the crisis or in our case fatigued with the ongoing caring role, it is hard to listen and remember it all, particularly when after the workers have gone you are straight back into carIng and the situation is fluctuating. Your mind focuses on the current job in hand not the information just given, usually not written down etc.
I consider myself an intelligent women, some may scoff ha ha, but if I don't get it all then I know I am not alone!
So when I return to work, I hope when I have to repeat myself to a service user or their family I hope I have more patience, I hope when a service cannot be provided I am more empathetic and give a good explanation. Also when a worker says they understand, unless they have walked the walk of being on the receiving end I assure you don't. I can safely say this having been on both sides of the fence!
So the battle commences to get a pre school education for Harry. Watch this space for either further frustrations or successes! Of course if I am successful social services want me to tell them all about it, but if not I should think they want me to zip it. For our needs are not critical at this stage. It's only pre school education and stimulation, not currently life threatening or creating any significant harm.
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