Thank you everyone! That is super helpful.
We haven't even requested day nursing, but if we did, we'd request on the days when I work. Our infusion schedule, and therapy schedule is set. We're always at the hospital the same two days a week, and as much as possible we try any fit doctors around that, and so of course, I never work those days.
But, you bring up a good point, which is not to cancel at the last minute. I work per diem/float, because my availability to work is too variable. But if I thought I was going to work, and then something came up (another kid was sick, or they didn't have a shift for me, or whatever), I should have the nurse work anyway.
And yes, I get that all changes are in writing, and signed, and need to be specific. Now you made me think of a few questions.
1) What happens if a shift ends and we are away from home? For example, let's say there's a one off doctor's appointment at that hospital an hour away, and it runs super late, or they decide they want to run tests that take a long time, or they admit him. You need to get back home (if you came by public transportation) or to our house (if your car is there). Can I just call you an Uber on my account? Or give you taxi fare? Will the agency cover the extra hour to get you home, or can I pay you for that hour in cash?
2) What exactly are the rules about transporting you and the child? I know you have to be in the same vehicle, and you can't be the one driving, but can you drive with anyone? Or just a parent? For example, our son likes to watch his brothers' games and practices. If a relative or neighbor offered to pick you and him up to go watch the game, assuming our permission and appropriate carseat in the vehicle, is that an option? Also, if he wanted to go for a walk with his brothers and Grandpa to the local playground or ice cream store, could you do that?
3) How much specificity do you need about what goes in the g-tube, and how much flexibility is there? Generally, at night the g-tube is easy because it's the same formula, for the same rate, at the same amount of time each night. That's all that's on his 485 right now, because we've only asked for night nursing. But of course we'd need to change that.
But in the daytime, I make a lot of judgement calls. I decide how much to give based on how well he eats, and also on what he tells me about how he's feeling. So, for example, if the goal is 600 calories across breakfast and lunch, and he eats half of what I offer, then during his afternoon nap he gets 300 calories through his tube. I don't usually use the tube when he's awake, but if we're outside and it's really hot, I might bolus some water. If he tells me he's got nausea from a medication, I might let him take a break, but if he's actually throwing up then I might run pedialyte. . . . All of it is done with input from his dietician and medical team.
Is it possible to write a 485 that reflects those kinds of judgement calls?