The CNS from St Richard's Hospice visited Wed, Thur and today. The elimination of the Midazolam from the syringe driver did not induce further fits but did remove the 'glazed over' effect. Yesterday the nurse suggested that she and her counterpart specialist neurology nurse, based at the community hospitals, should review and assess Colin's swallow with a view to returning to taking fluids and meds by mouth again, and so made all the arrangements for this to happen today.
With a fair amount of difficulty, the two nurses carried out the assessment, using the dry spoon method and then with a very small amount of thickened water. However they decided that Colin's swallow was not working well, there being a delay with taking fluid in the mouth and actually activating the swallow. This would mean that if Colin were to take anything by mouth there would be a significant risk of him aspirating. This left everything in a very difficult place as the lack of fluids and meds over the last week was having a significant negative effect.
After a time to consider a way forward they came up with a plan of action. One option was to transfer Colin to the hospice in Worcester for hydration (this is not something that could be done at the nursing home or in the community hospital). I was so relieved they had mentioned hospice and not Worcester hospital that I can't remember the other option! The hospice was their preferred option and they had had to do some wheeling and dealing to get Colin a bed there.
The plan is to see whether Colin's swallow improves following a weekend of intravenous hydration and re-introduction of the steriod (the latter decision made by one of the doctors here). If there is no improvement then all will be reviewed again next week in what to do next in terms of how to support Colin.
I am typing this by his bedside at St Richard's and he has now fallen asleep - something which he hasn't done all day!