Right, deep breath, so many things going on at the moment, or should I say not progressing as they should be, involving Hubby’s care,
MRI Scan Results
Results letter says “oedema-like marrow signal in tip of T10/11/12
spinous process with possible destruction. Likely Osteomyelitis” does not
sound good does it !
Baclofen Pump Refil.
Hubby travelled all the way to Addenbrooke's on Wednesday, despite having grade 4 pressure
sore. We are lobbying for this in future to be done at consultants Peterborough
clinic. We will fight them on the beaches, we will fight them ...
CT Scan.
After two abortive attempts, no ambulance supplied, got Hubby’s scan done
on Thursday. Scanning unit at Peterborough were very supportive, used some
initiative , did a scan of his whole thoracic spine plus upper lumbar to make
sure surgeon has full picture including the new hump that has appeared on
Hubby’s back. They also did a dye contrast scan . So hopefully RNOH surgeon has
all the info he needs to make a speedy assessment. We now await the results. He
will send for Hubby for an out patient appointment first, so another long
ambulance trip for a 10 minute consultation, not happy about that. Why don’t
they do stuff like that using video calls. I know they like to see / feel the
patient but in this case there is more danger to Hubby travelling all that way
than the value the consultant will get out of the consultation. Unless they will
admit straight away.
Pain
Hubby in varying levels of pain, keeps complaining of different
kinds of pain in different locations. Eg keeps getting sharp pains in his head,
occasional stomach pain. His arms and shoulders are a worry, he is really
concerned that he going to lose the little function he has. Neuropathic pain in
his feet is bad at the moment as well. Been waking me up during the night
because he keeps getting painful spasms in his right leg.
Carers
No word what so ever from the dude at the PCT in charge of
getting us care provision. I have been told he is breaking the law not getting it sorted
as Hubby comes under Continuing Health Care . NHS is therefore liable to provide his carers. Meanwhile
I am coming under pressure to put Hubby in a nursing home because of my own
health problems with my back. I find this an incredibly stupid suggestion on
lots of levels, nursing homes are not keen on taking patient on that should be
in hospital, Hubby needs a specialist unit for the severely physically
disabled, but I know they will try and bundle him into a dementia unit which is
totally unsuitable as he is as fully mentally aware. We are going to use some
of our savings to get me checked out, MOT, when I get him in hospital, will
rule out any serious causes of the pain in my back and hips. I am not happy living on pain killers
long term not knowing what is up. Probably a trapped nerve though.
Next Moves
Firstly get through this long weekend. After which continue to
lobby GP’s & surgeon to get Hubby into the spinal unit asap. Battle to get hubby his carers afterwards, 1 battle at a time.
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