Changeover Day again, Sarah coming in at lunch time and me getting some chill time and sleep.
Kip’s been in good form, having a little Lego session sat at the table and not hooked up to anything for a good half hour in the morning; he’s so full of life and energy when he’s “disconnected”, and it’s a bit of a blow to have to plug him into the milkshake machine and squirt drugs up his nose every few hours.
Sarah and I are being supervised in drawing up and delivering his medication, which is one of the pre-discharge activities we do so that when he’s well enough we don’t have delays in getting the boy home.
Kip’s blood counts are also doing really well; his neutrophil count is expected to go up and down a bit while it figures out what its doing, and so down from 2.1 to 1.7 today (is this like the money markets? Or Top of the Pops? Down 4 on last week’s high is Haemoglobin with their version of “Red Blood Cells”, and a new entry for this week it’s Neutrophils ft. Lymphocyte straight in at 0.1″).
One thing we’re still having problems with is food; Kip has stomach cramps and doesn’t want to eat. He’s also lost a bit of weight, but doesn’t want to eat.
Part of that is because he’s worried that eating when he has a sore tummy is going to make it hurt more; that might be true, so we just have to steadily and slowly encourage him to try and see how it goes. There’s still plenty time and we’re sure he’ll be relying on the feeding tube for a while yet, at least to top up when he does start eating again. Another part is because, he is on a “Safe Diet” and, well, look at that broccoli.
Everything Kip is given to eat has to be devoid of any possible infection. That means getting it hot, keeping it hot and, when it comes to veg, boiling it until it is very definitely dead.
This is, absolutely, not a dig at the cooks at the hospital; they have to provide something that will not make the very vulnerable children ill. But, and every hospital in the world struggles with this, it’s hard to make appetising, healthy and fresh portions of meals for hundreds of people with varying needs and within a tight budget.
We get to take in some of Kip’s favourites but he seems to have gone off them too; he doesn’t really eat the Haribo, he’ll have a tiny bit of a banana pouch, but won’t entertain crackers or macaroni cheese or fish fingers which previously would have survived on his plate for nanoseconds.
Next time I’m in, I might try a Dorito.