Monday, 27 May 2013

A Quick Update . .

Things are still a bit rough for me at the minute. We are still struggling to get on top of the pain, most nights are restless ones with barely any sleep. Days are long and some days are spent sleeping and others are full of agitation and discomfort. I've not been able to go out for the past 2 weeks because of the NCA Fentanyl I'm on, mummy isn't allowed to use it as its a nurse controlled drug and not something they allow at home. Nannie, Ellie and Taylor came up to see me on Saturday which was nice. I had a little play with my duplo with Ellie and Taylor before I got tired and wanted a sleep. At that point they all went to do some shopping whilst I got some rest. Mummy went home today to see my sisters, I was asleep all morning but when I woke, Dani (my nurse) got me sorted and took me for a walk in the park for half an hour. I enjoyed that. Recently I've been having quite a few vacant episodes, this is something I started with 18 months ago but we got it sorted with medication but its starting again now. Mummy said she'll talk to my Neuro doctor about it tomorrow. 
So, maybe wondering what the plan is with my as I've mentioned previously that we should be getting a plan of action from my doctors. We still have no plan. There has been a mixture of opinions between the radiologists and my scans of my Gall Bladder. It has now been decided that we have to call an MDT meeting to be held in a few weeks time to discuss where we go from here because at the minute, doctors are stuck and don't know what to do for the best. In the mean time, the doctors involved will be discussing things between them and with others to hopefully pull a plan of action together. I'm to carry on with all the pain reliefs I'm on as long as its needed. 


  1. My love and prayers are with you Harvey , I long to see you , I love you lots

  2. Lian, it's Toby's mum Helen here we are in on Tuesday on M3 at Sheffield. Toby having 6 hour infusion but would like to pop up to see you and Harvey on M2 if free. Can you Facebook message me if that's okay. x