Friday 7th January the physio met us at the Graham Hill Unit to update and assess exactly what is TDB’s level of injury. This is done with a series of touch and motor function tests. Everyone we have met so far has concluded that without TDB’s limiting spasticity / spasms he could be quite a bit more independent and have a quality of life that thus far has eluded him. After physio we went up onto the spinal unit ward so that TDB could be provided with lunch. Food at the hospital is still hospital food but is oodles better than we experienced at Sheffield three years earlier. They have availed themselves of a food service akin to Wiltshire Foods delivery where frozen ready meals are re-enlivened up in the microwave. This gives the patient some considerable choice on a par with a pub menu. In the afternoon we met up with the OT and trialled TDB’s new body brace. Whoops not a good session the brace was sticking into him in all the wrong places he shouting out in pain by the time he had been rolled into it, strapped tightly etc. The brace was sent way for some alterations to stop TDB’s manhood being squashed. This brace by the way looks like a piece of custom prop body armour from a roman epic except it is doll coloured salmon pink skin and plastic looking. It comes in two parts a breast plate and back plate joined together with white tapes that secure the person inside as tight as they can bear. When off TDB it really shows how twisted his back really is and looks like it belongs to a very strangely shaped individual indeed. I keep telling TDB it is a blank canvass that is crying out for a custom paint job but for some reason he is not impressed.
We have the weekend free of seeing medical people so split our time between meals in the ward, using the Aspire Café and resting up in the unit. We were going to try and get out to a local shopping centre but TDB did not feel up to it and Saturday was “Bowel Day”.
Monday 10th we awoke thinking we were to attend TDB’s MRI scan later that morning but this was cancelled. TDB was having some bladder problems so we asked to speak with his consultant which meant that we missed yet another physio session and our chance to get TDB on a tilt table. Later that afternoon we met up with the OT again had a more successful session with the body brace and had a left hand splint made up for TDB.
Tuesday 11th in the morning another session with the OT and straight after a physio session where TDB tried out a different type of sling for hoist lifting. He found he could just about tolerate this different design although he did say it squeezed some parts that men don’t like to be, but hey more progress made there. Early afternoon we retired to the G.H. Unit to carry out yet another “bowel day and shower” before preparing for TDB’s rescheduled MRI scan. We thought they we were going to give TDB general anaesthetic to make him flaccid for this as his twisted body does not fit well under this machine that requires the patient to lie as still as possible. So we were a bit surprised when they suggested they were going give TDB a series of Diazepam (Vallium) injections. A bit alarmed actually as TDB has had some rather nasty after affects to previously orally administered Benodiazepams. Anyways they convinced us this would act differently as it was straight into the blood stream. In some ways they were right, but it did mean that in the end he had to be administered 20mg in 5mg increments for it to work a little. TDB tells me the manual handling of his body under the scan was not appreciated and his head became jammed at one point because of his spine curvature and at one point the machine seemed to kick back by having an operational failure. Eventually they got it done enough for the consultant to see what she wanted. It is horrible seeing a loved one under the influence of these type drugs and having been there before with my mother I did not really enjoy reliving the experience. What do I mean? seeing someone slurring their speech, their eyes glazed with vacant look , they are there, but not wholly so. Like being out for a drink with people getting drunk, when you are not drinking alcohol is the nearest everyday occurrence I can relate it too. TDB was totally exhausted after this but insisted on retiring much to chagrin of the ward nurses back to his home from home on the GHU, for me to monitor him during the night for any of the bad side effects. That night TDB also carried out a sleep study looking for signs of sleep apnoea. This is carried out by having two belts across the chest and a carbon dioxide meter attached to ones nose, all of which feeds information back to a small computer unit. The input then downloaded and analysed. TDB actually for a change probably only got me up twice during the night to help with his legs where usually it is an hourly ritual.
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