Well other than the amazingly crippling pain in my donor site….which the docs now think is damage to the radial nerve and depending on the damage it could be perminant – they are hopeful that swelling could be making it worse but time will tell.
… G came in he looked shattered and pale so I asked a friend to collect K from school and give him tea to give him a break…. He’s been looking after house driving up to 3 hours a day and making the house ok for me to live downstairs … And his back is buggered…..
I saw Nutricia nurse today. She’s the one who trains you how to use your feeding pump… .. Told her I had a mentor called Oliver.(he’s a young boy who drags his pump round like it’s a rag doll lol I met him and his mummy at Little miracles a charity in Peterborough who help families and provide activities the most amazing sensory room… for children with additional needs and disabilities. It’s an amazing place will link below)…. Her face gave away instantly she knew him….. She then went on to say the pumps will only survive so many drops and to avoid dragging it PMSL honestly I almost peed my pants. My training was fine though it’s nice and easy to use Anyone who knows pump feeding I’m now up to 60mls per hour hoping to get to 80 or 90 soon…. But I’m having to do it slowly to cope.
Anyways HOME TOMORROW………. FEELING SCARED AS HE’LL BUT YAYYYYYYYYY….im scared as when they remove the tracheostomy they do not close the hole or stitch it up – they just put a patch on it – its like a rubbery plaster to stop air escaping – what if it leaks what if the swelling cuts off my airway – what if they missed some of the cancer !!!
My friends have been bloody amazing I’ve been honest about how I’m feeling and when low they have said such amazing things… Even a friend who lives in Australia ….. Little Miracles Peterborough Wonky smiling Xxxxxxx
Little Miracles Peterborough Wonky smiling Xxxxxxx