We are in a new phase of Isita’s treatment and it feels like a new phase of life. We get to spend happy afternoons at home together. Isita helps in the kitchen, watches movies with Jamie, joins in a game of Monopoly. A couple of days ago she put on her Pembridge Hall tracksuit and spent an hour at school. The day before Marta took her to join a movie outing with some of her friends. They took it in turns to hold hands going down to the Electric on the Portobello Road.
Yes, she gets tired and needs the wheelchair, she spits into a cardboard bowl and sometimes vomits. She has to wear a nappy. These continuing reminders of her condition will be around for a while but are slowly receding. Every day she seems to have a bit more energy, and it may also be that her gut is settling down thanks to a new feeding tube.
This is the development that Marta and I are watching most carefully and nervously. They put in the NJ tube on Wednesday. Unlike her previous NG tube which ended in her stomach, this one passes through into her small intestine. This is needed as the investigations from a week ago showed Isita’s treatment has caused some paralysis in her stomach, which could take a long time to heal. The best thing is just to bypass it for now.
The first feed we put through it on Thursday wasn’t successful – everything came out every which way. On Friday we took a rest. On Saturday she had a double quantity of feed with much less discomfort and upset than before; the same today.
But get this, all day today and all last night she didn’t do a poo. After months of chronic and frequent diarrhoea this is a revolution. Is she starting to digest?
We have been monitoring this with obsessive care. The photo album on my mobile is crammed with images of her productions – am I not the apotheosis of a proud father? Don’t worry, I promise not to show them to you, it is hard enough to persuade the doctors to look. God willing, soon I can delete them all.