It feels like we're living by numbers. The simplest things are now quantified; nothing is vague. 

We count Ollie's calories (1750 per day). This means we weigh out 100g pasta for him, and know which line on our striped Ikea glasses measures exactly 250ml for his evening milk. We know how many calories are in whole milk (68/100ml) versus Jersey milk (81/100ml). We can tell the number of calories in each kind of Ensure by just glancing at the shape of the bottle. The small bottles, at 2.5cal/ml, are too rich for him to tolerate; the large ones, at 1.5cal/ml, mean that his morning 900 calories via NG is a huge volume. 

We rely on the timers on our phones to measure out Ollie's mealtimes. We have the same ten minutes of thinking time, plus five minutes final countdown, every time. We know how many minutes the trip from home to the Medway hospital takes (17, without traffic, assuming the speed limit in the tunnel is 50mph. At rush hour, the speed limit drops to 30mph, adding minutes to our drive). We know the hospital car parking costs off by heart, and when the clock ticks to the next category of charge. We know the train timetables that get us to London. 

We keep an eye on how long we walk the dog with Ollie. On waking time; on medication time; on how long we've got left of the day before we can just all go to bed. The clock seems to be ticking slower by the day. But we count those seconds. 

Our mobiles are filled with new phone numbers. The local hospital, the specialist hospital, Ollie's nurse, the crisis team, the local psychiatrist, the pharmacy. We now have the phone numbers of our neighbours; until recently we've only ever chatted in our gardens. Now, we have to call them so they can check in on our older son when we are running late at the hospital.

We have 13 knives in our knife block. I count them repeatedly to make none are missing. 

We can recite medical figures too. We know that Ollie's heart rate bottomed out at 38 bpm when he was at his lowest weight. We know that lowest weight too, down to the gram. We know the doses of his meds, by the milligram; we can discuss the change in blood pressure from sitting to standing. We know the maximum rate that the pump can churn out his NG feeds (400ml/hr). We know how many millilitres of liquid he needs in 24 hours for normal kidney function.  

Other figures in our lives are definitely more frightening. The statistics we read about anorexia are not comforting. The mortality rate is terrifying. We know how rare Ollie's case is; the percentage of male sufferers of his age is tiny. Yet one of the scariest numbers is probably the number of intrusive thoughts in Ollie's head: a million, every time he takes a bite of food, he tells us. 

Knowing all of these numbers, and living by them, is incredibly hard. But harder still is NOT knowing how much longer we have to wait before he can be admitted. And how long it will be before he feels even a tiny bit better. 


Popular Posts