Ana’s home now. She went to the infusion center at Westchester as planned and Dr. Sandoval (the attending oncologist who works with Dr. Hochberg) said her port looks good. One of the infusion nurses felt the rash was an allergic reaction from the Tegaderm and gave Jim a hypoallergenic dressing to use instead. She came home with that, but it’s coming off right now, so he is going to change it (again) before she goes to sleep.
The plan is for me to check in with the infusion center on Monday and see if Dr. Hochberg can manage to pinpoint a more specific time when Dr. McBride (the surgeon who placed the Broviac) can remove the damn thing, only now I don’t know if it even needs to be removed since she doesn’t have a line infection and it will be helpful to have it in place for the transplant, but…this constant concern over infection and fevers is very draining.
Even if Ana doesn’t get the Broviac removed, she still needs to get another MRI under sedation. As an outpatient, it could take a couple of weeks to get her on the schedule. If she’s admitted next week, it will take a couple of days. That seems like kind of a crazy system but once you’re an inpatient things are handled much differently. Tis it’s own world.
Speaking of indecision, Ana has a temperature of 100.6 right now which according to one physician (Dr. Martinez at Columbia) means we should bring her to the ER but according to every other physician we’ve spoken to is not high enough to warrant rushing to the hospital. I sent an email to Dr. Martinez, but I doubt she’ll be as responsive as Dr. Hochberg. Jim remembers Dr. Martinez actually said 101.4 in the hospital, so she may have mistyped the temperature in her email. Wouldn’t that be funny if we rushed Ana to the hospital because of a typo?
Anyway, I gave her Tylenol and unless the fever goes above 101.5, WE ARE GOING NOWHERE.
I shall be calm. I shall remain composed.
I am gearing up for a long post about insurance which will focus on listing a few things I’ve learned that I kind of think everyone should know, but I’m too tired tonight. The thing I will say right now to all who read this is please don’t switch your insurance company from CDPHP to some OTHER company because of my experience. It’s not every day that an 11-year-old suddenly needs a liver translant and, except for the faceless bureaucrats at the top of CDPHP’s food chain, they have been pretty easy to deal with (also, once I got the right case manager things went a lot more smoothly – but that will be included in my informational post on how to navigate insurance companies during medical crisis). Since it’s the end of the year and that means a new enrollment period for many people, I really just wanted to put that out there.