Andy has been at LSCIC now for 5 weeks now and he is classed as being on a rehab bed, not an assessment bed.
What has he been doing in this time?
Well, his day starts around 8am with personal care.
9am brings his physio in for chest management- this is aimed at reducing the 'gunk' sat on his lungs and strengthening them up as well. He also ROM (range of movement) physio to keep the limbs moving so they don't seize up, after all you can't put clothes on easily when you don't bend very well!! Ward rounds happen at this time too and the trachy team see him also.
Between 10am -1pm Andy will do VFB-vent free breathing. This involves sometimes just the nurse and other time the respiratory team will be involved or SALT. At the start of the VFB he blows into a spirometer to measure his VC (vital capacity- refers to the maximum amount of air the person is capable of expelling from their lungs after maximum inhalation, normally between 3-5litres.) and then he also does this at the end of the last VFB. Andy will do 2 or 3 VFB sessions a day. At the start of being here Andy's VC was 600ml and 5 weeks later he can achieve 1000ml. Excellent progress.
1pm often brings Sarah, the SALT lady. She is working with Andy with his swallow and communications. She often touches all over his face and throat and is quite 'hands on' with him. He has exercises to do to strengthen those muscles that haven't been used properly in over a year and she is starting food therapy with him with the aim of being able to eat for pleasure. This may seem a backward step because he was eating fully in GRH but as their investigations show his swallow tires easily and he silently aspirates, leading to those chest infections he seemed all to fond of. He also eats better off the vent, cuff down, than on because the airflow forces him to swallow more often!
3pm and Emma the OT comes to fetch him to go down the gym. For this he is sat in his powerchair (loaned) and drives down using hand controls. His skill in this area has improved massively and he isn't running people over as often but still needs more practise, as with anything. But he is getting there well and this should be something that becomes second nature to him.
Down in the gym Emma might be perceived to torture him with various machinery and what looks like a little electric shock making machine, but they have reasons behind them and seem to be producing results too.
4pm is a return to the unit and possibly seeing Sarah again, or anyone else who wants to say hello!
In between all this going on there is nursing care to ensure Andy's skin is cared for, Andy's meds are administered, bloods taken etc etc. It's never ending busyness for him but that in itself is good for him.
Somewhere in all this his parents visit at the beginning of the week and I (his wife) visit at the end of the week. I tend to turn up on the ward and walk in whatever time (after 10am) despite the official visiting hours notice but Andy's parents are better behaved!
Personally, after doing this for 15 months, I've learned to stand up for what I want to see or do, especially in regards to Andy but I do it respectfully and hopefully that then stands me in good stead with everyone. I feel here, in Stanmore, we are all working for the same thing- to see Andy achieve as much independence as possible and to be able to rejoin his family in the family home. I now have so much more hope to see that fulfilled and to that end can never thank Stanmore and its staff enough.