A year ago today I went up to London to the Houses of Parliament and gave a speech on transition to MPs and important figures of the hospice world. It was my first speech and was the first event I attended with Together for Short Lives. What a long way I’ve come since then. Today I am off to the Department of Health to give a speech to important figures in paediatrics and child health about coordinated care. How I wish I was as well as I was this time last year, though at that time I was very poorly and we didn’t know if I would make it to Parliament. This year I’m even sicker, but still fighting with the same, if not stronger, determination to make a difference. For all of my unwell friends, for parents with poorly children, and for all the poorly children and young people in the UK (if not the world), I am doing this for you. Then were going to The Royal London to see the TPN nurse/team to talk about the Hickman line situation. I only have one working lumen of my line so am missing out on a lot of important things as we struggle to fit in the essentials - I have a double lumen line because we cant manage with one lumen - but I cant have a new line until we know the Acinetobacter has gone (which were worried it hasnt as Im still running a temperature and my sites are still oozing). Provisionally I am being booked in to have a new line a week Friday (28th Nov) pending the results of swabs and blood cultures which cant be taken until Saturday at the earliest. Then we have to wait 48-72 hours for cultures to grow. It feels like were living from one disaster to the next. Weve already had to deal with a urostomy bag leak today which soaked me and the bed - I hope thats not a sign of things to come.
Posted on: Wed, 19 Nov 2014 06:52:54 +0000
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