Lucas's urine didn't clear the first two times -- was 10/12 and needed to be 10/10. The third time was 3pm and the lab spilled it! Since the outpatient chemo infusion clinic closes at 7:30pm and Lucas needs at least 4 hours of IV flushing after CPM (just like 4 weeks ago), it's not enough time and he is waiting to be admitted.
We asked to come to infusion clinic for ARAC every day too. Home care nurse is not readily available. I did it at home last time. But after talking to another parent form ALL list, we decided not to do it at home again. The nurses here kept telling us that they have had parents who are much less educated than us to be able to do it at home. I felt like I'm being judged today by telling them that I still want to come here to have it done. I miss our usual nurse practitioner and doctor, neither of whom we got to see today. Some nurses think that they have to be tough so things can be done in their way. Showing Lucas's urine record last week wasn't my proudest moment this morning either. The amount each day is inversely correlated to how much I was away at work. I decided to buy another thermal bottle and make 3x12oz bottle in the morning for the grandma to make Lucas drink during the day.
The nurse is telling me that since ARAC won't be given today until later, tomorrow we need to wait until later afternoon/early evening to be able to go home(24 hour in-between), if we insist that we don't want to do ARAC at home. They are really trying to make me feel doing ARAC at home makes much more sense. But I've made up my mind. We only needed to use ARAC this week and next, and repeat again during delayed intensification (mid-late June). We can handle the extra hassle so we don't need to deal with IV chemo at home.
Hope it works out what u want!
ReplyDeleteDo not care about what others think as long as you are doing the best for your child. Hope everything will go smoothly today.
ReplyDeleteAbout 1/3 of the staff at our clinic/hospital probably dislike me because I questioned the way things were being done. The disapproval bothered me at first, but know I see it as a badge of honor. We are more interested in taking care of our children the best way that we know how than making friends with people who do not have our or our children's best interests at heart.
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