I think it's safe to say that our little family is used to "doing well". Both of us adults are Oxford graduates, having been top students at our schools. Both of our children are academically gifted. We are all stubborn, and hard-working. We all expect to be able to do things well. We are not satisfied with a half-arsed job; we do things properly or not at all.
Yesterday we took our younger son to GOSH for his weekly anorexia clinic. We had followed his meal plan exactly - because we have to do things properly - so on one hand we expected to be told that we had "done well". But the week had been the hardest seven days of our lives, and for the first time in my life, I absolutely dreaded being told that we had achieved our target. I did not want to be told to carry on, or to "keep up the good work". I was exhausted and terrified.
So it was time for Ollie's obs, and weigh-in. He had, as we had expected, improved physically. His pulse rate and blood pressure were better. His hands were warm. His weight was holding steady, even up a little. We had managed a week of re-feeding at home (albeit with four trips to hospital to back us up). We, once again, had done well.
Yet we didn't want to feel successful. We didn't want to be congratulated on our hard work. We wanted a break. The trauma of feeding Ollie three meals a day was taking its toll and I was at my wits' end. My husband was still grimly hanging on, but I was increasingly aware that he was having to sail this ship alone.
I wanted to be told that we were shit at this. That we were incompetent, and that they would admit Ollie as he'd be better off being cared for by someone else. I wanted to sit on the floor and cry and to beg them to take him. Part of me wished that we had failed to keep Ollie fed, so that they would have to take him.
The reality is that despite all of our efforts and feelings, there simply isn't any space for Ollie at the inpatient unit. The staff listened to us and recognised that although we were getting the calories in, the situation was not sustainable. So Ollie is now at the top of the list for admission; meanwhile we will increase his NGT feeds to a daily hit of 900kcal every morning at our local hospital.
So on we go.
Post a Comment