Last night at 1:00 the nurse is bringing in a new medicine for J. It was a medication from home to adjust urine pH, but they had temporarily stopped because they would be adjusting the urine pH other ways. The dose was twice what he had been taking at home (I tested urine pH so many times to get us to the right dose) and it was being started in the MIDDLE OF THE NIGHT. You may think it's not such a big deal to start a medicine in the middle of the night, but then that's the schedule we get stuck with. 1 am and 1 pm. I did something I do very little of, I refused the medication. I said it could be started in the morning and that we could re-address the dose in the morning. (I learned during the admission for kidney stones that bad schedules get perpetuated. J missed his regular time for the Neupogen shot (the one to help make more white blood cells), and they didn't give it to him until about 11:30 pm. Next night, rather than giving it at 8 pm like we had been at home, they woke him at 11:30 pm to get the dose). The issue continued the next morning when the daytime nurse told me that the pill cannot be divided in two (as we had been doing for several days) and that he had to have the entire pill. Second time in a day that I was refusing medication until we could talk to the ordering doctor to clarify the dose.
They had to start a peripheral IV line for the blood transfusion last night. Because it is so important to not disrupt the continuous infusion of chemotherapy, they now use the IV line for all other medications, including Zofran (if you have needed it, you love it, it helps treat nausea). The Zofran injection hurts J. Some IV medications really do hurt when injected, probably in part due to their pH. He screamed through two doses. After the second, I learned asked why they are no longer using the MediPort for this medicine and received this explanation. I then asked if he would be able to take the medication by mouth. The answer was yes.
Tonight they brought a new medication. I had not heard that we were starting a new medication. Basically, whenever J urinates, he gets a lot of pain, likely related to the stent or left over stones in the ureter. Apparently they had talked with Mom about possibly doing it, but the plan was to wait until J was sent home. After a few questions and a discussion with the nurse, as well as reviewing all the notes from today, it was determined that this new medication was being given with the goal of decreasing the pain with urination. Suddenly the medicine I was ready to refuse was on track to be J's new best friend and he agreed to take it.
Tonight we also discovered that tomorrow at 6:00 pm, he will not be finished with chemotherapy, but that they will start the last 24 hour dose of chemotherapy. Monday we thought he would go home Saturday morning. Then we were told it would be Sunday (we thought morning), but it looks like it will actually be Sunday evening, or possibly Monday morning depending on whether they want him to get more IV fluids.
There are times where you need to be your own advocate. If you don't understand why something is being done, insist that you get a good explanation. You should know what each medication is for. You should know why you are getting a test. If you don't know about your treatment plan, nobody will be able to advocate for you. You always have a right to refuse medication or treatment. This behavior can go too far, though. When you find out the schedule is different than you thought, nobody benefits from a tantrum. Maybe you have self-control and don't tantrum but you still want the schedule changed, so you begin to insist... Sometimes you need to roll with the punches. Sometimes you need to stick up for yourself. Sometimes deciding when to use each behavior is difficult.
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