PCT/MDT meeting today.
The PCT didn't turn up. The team at Holy Cross didn't expect them to. Her father and I were there, along with Judi, Rasheed, Daniel and Dr McLusky.
Items for discussion and the answers are:
Timescale for trachy - gradually weaning still. Tolerating uncuffed.
CT results - shunt working ok? Results not back yet.
Chest X-ray results. Results not back yet.
Bone flap? Been chased? In or plate? Dr McLusky to chase John Radcliffe. Bone won't go back in until Helen is infection free.
Vision testing - prob won't be done. Eye gaze will track eye movements. Eye test will only show that optic nerve is intact, not how she is interpreting. Judi will continue with Eyegaze.
Retina test? - inform Holy Cross when her last one was done. They can then arrange an annual retina screen.
Annual bloods for diabetes checks? - Dr McLusky says they have prob been done but will check.
Botox? - will be done after infections have cleared.
Splints - physio's will look at foot splints. I told them I was concerned about the toes on her left foot curling under.
Palm protectors - physios will look into getting something or will look at her current splint care plan to see how long she can wear the soft splints.
Hydro won't be started until Helen is infection free.
She has been on the leg cycle. Sits in wheelchair and cycle moves legs. It is active and passive.
Still has diarrhoea. Skin is excoriated because of diarrhoea. Sitting out has been reduced to 2/3 hours.
New wheelchair has arrived, with tray. Will be set up for her on 10/4/13
Drugs she is currently on are -
Loperamide - bowels
Baclofen - spasticity
Rinitadin - ulcer prevention because of PEG feed
Paracetamol - for temperature
Hyoscin patch - queried re secretions. They will monitor.
Lantus insulin - diabetic team in Basingstoke suggest M3 or Insulatard
Sodium chloride nebuliser
New goals were discussed but these are just extensions of the current ones really.
Pressure area care, infections,
Range of movement
She has £89 in hospital account. Chiropodist is £18, visited end March and hairdresser is £12, visited beginning of March.
Helen vomited again yesterday but only a small amount.