A week later Joe's second weekly review meeting brought with it the next setback. The boy who looked up from the sofa when I walked in, was a very different boy to the one I had seen on my last visit. His eyes were red, damp and puffy. He was visibly upset despite the fact he was watching a Man United match on the television.
He told me he was really down because he felt he was going backwards. After the Wednesday review meeting he had been told several things which upset him. Despite gaining over 2 kg he was told:
• he had to continue on bed-rest for the foreseeable future
• his fluid intake had to be increased as he was still showing signs of dehydration
• the doctors were considering giving him medication because they felt he was so depressedbecause he was going to the football match on Saturday with his dad, he probably wouldn't be allowed a visit home for several weeks.
I tried to calm Joe down, but I felt anger welling up inside me. We all knew that Joe's recovery phase would be difficult and for every two steps forward there would be one back. However, it seemed that Joe was being given no encouragement whatsoever. Despite the fact that he was doing everything asked of him, he seemed to be making no progress in terms of his daily routine. In addition he was putting on weight and his blood pressure and pulse were rising to more normal levels, so why was he being held back so much? Joe's reaction to today's meeting was to revert to his initial behaviour on arriving at The Great Barn. He begged and pleaded with me to take him home. He promised he would stick religiously to his re-feeding programme and he was understandably very distressed at my refusal to bow to his demands. It was also apparent that some of his previous habits were returning. He was collecting saliva in his mouth and I could see him tensing his muscles and doing his counting exercises. In turn I could feel my faith and confidence in leaving my son in this environment waning dramatically. Of course I kept this feeling from Joe.
It was time to have another meeting with Dr Cornwall. Joe really did seem to be going backwards. He had no goals to look forward to and mentally seemed to be regressing. The question of medication had reared its ugly head and both Joe and the rest of the family wanted to avoid this if at all possible. Joe didn't feel comfortable talking to any of the staff apart from Fiona. He felt that they always promised to follow things up for him but rarely seemed to do so. As a result Joe was often left feeling let down, lost and lonely. His natural reaction was to ring home and beg us to come and get him.
Was this article helpful?