Coming up to two weeks now that Paige has been back at Piam Brown and progress seems to be slower than a McLaren pit stop. But progress is being made: today's weight was 9.8kg and the red sores on her hands and feet are healing nicely. We are hoping that she will be discharged from PB tomorrow, although she will go from there straight to QA, in order for us to be trained on use of the feeding pump.
But didn't they install the tube last week?
Yes. We have been giving her formula at night, via the feeding tube, over the last week. This will supplement the food and drink she takes in during the day, but should also stimulate her appetite (which it has). The idea is to ensure that she gets the calories she needs to gain weight (and get healthy). This is different to the fluids she was on before, which helped with hydration, but not much with nutrition.
The bottle of formula is hooked up to a small pump which administers the liquid at a set rate over 12 hours. She started at 20ml per hour and are now up to 40ml/hr, or nearly 1/2 a litre overnight. She also started with quite a weak formula, just to get her gut accustomed to the whole process. Last night the concentration was increased (I think we want to get to 1 calorie per ml) but she threw up everything at 0600. (She was not impressed.) So we make have to take it more slowly.
The feeding tube will remain in place indefinitely (or, as far as we are concerned, until we can get her up to a good weight and eating well) so Lisa and I will be given a pump to take home and need to learn how to use it. (No problemo: if we can work an iPad, smartphone and the new dishwasher, a simple pump should be a breeze. And it is, although, of course, it's not just the pump we need to learn, but the whole process.)
It starts with a test to ensure that the tube is actually in her stomach (and not, say, her lungs), which involves sucking up some stomach contents and testing the PH on a coloured strip (takes me right back to 3rd from Chemistry). Yuck! No, it's not very pleasant, and I'm sorry to had to hear it this way....well, you shouldn't be eating your breakfast when you read our blog.
The pump is straightforward, but the one that QA will give us to take home is a different model, they want Paige to spend a couple of nights there to make sure we know what we are doing.
Anyway, the first picture above was taken this morning. She perked up at about 1100, just before the doctor came: she let her listen to her chest, showed her the sores on her hands, opened her mouth for an inspection and then pulled up her shirt for a look at Mr. Wiggly. Amazing! (Normally she kicks and screams and squirms and cries.)
So progress is definitely being made. They took some bone marrow on Friday, but the results of Flow Cytometry were not available then. Mary will analyse them and come and see us tomorrow. Fingers crossed.