Our trip to Philly this week was out of the ordinary for a variety of reasons.
First, we took Mom to my brother's house. It's not that we never do this, but the last time was in August. Mom is getting harder and harder to motivate to leave, and she's having increasing difficulty getting in and out of the car. Unlike my Aunt Mary, who stubbornly continued doing her physical therapy exercises until the day she died, my Mom is content to just sit. For the most part, she seemed to feel that conversation was an absolute necessity, so she just kept on talking. And talking. And talking. The final approach to home went like this: "Is this Broad Ave? Why are we getting off here? Why are there so many Pepsi trucks? I think I'm growing beard!" (That last combo sent Babygirl into complete hysterics.)
Second, we took the time to catch the subway and head into downtown historic Philadelphia. All Babygirl knows of the City of Brotherly Love is CHOP, and while it's a great place, it's hardly her happy spot. For a child who loves museums, real estate and shopping, Philadelphia has a TON to offer. We saw the Liberty Bell, Independence Hall and the Bourse. We took a horse-drawn tour of the neighborhood and now Babygirl has a list of things she wants to do 'next time.' It's good to have some positive energy in that direction!
Third, we hit the King of Prussia Mall. If you are ever in need of some indoor exercise, I highly recommend the place.
Last, we saw three sets of doctors.
As usual we saw the transplant team. Everything there is fine. They made no changes in her medications, her anemia is better than usual, blood work at home in 6 weeks and see you in three month. Appointment scheduled.
We saw a gynecologist, since Babygirl has been quite irregular since dialysis started. She was lovely, interested in more than just reproductive issues, and kind. She prescribed medication for Babygirl's acne and for another chronic rash that we've shown everybody that no one else was at all concerned about (it's cosmetic, not dangerous - but cosmetic matters to a 14 year old at the beginning of summer, so kudos to her for noticing). She gave Babygirl medications to regulate things, see you in three months. Oh, and we aren't scheduling out that far, so call in three weeks to get that set up.
We saw the neurology nurse practitioner. She asked how things were and I told her things are horrible, thank you. Turns our she isn't the correct NP - we were supposed to be scheduled with the one who is on the headache team (and we would know this how? It was noted in the computer, but apparently not where the scheduling staff would immediately see it, and she wasn't available 8 weeks ago either). When she heard our story, she made us wait for Dr. Y to check on things, asked why we weren't here sooner, or why didn't we call? We tried. When things got bad in January we DID call, we did try to schedule an appointment for 8 weeks ago to coincide with our last trip down. I made clear the urgency of needing to be seen but their scheduling is so bizarre it wasn't possible to make it work. And, mea culpa, I didn't ask for a call back to discuss things. On the flip side, no one offered a call back as an option.
Our options for treatment are limited. Babygirl has tried as many medications as are safe given her overall condition. They want us to increase the Keppra to a mind-boggling 1500 mg twice daily since she initially saw some improvement with this drug. They are going to ask nephrology about using triptans to treat the headaches when they occur since right now we have no effective treatment. They are going to ask about switching up her blood pressure medications to see if that helps. And if this fails, they are going to try Botox. Seriously? Botox suggested for BOTH of us? For people who are not biologically connected we have an awful lot in common. Oh, and see you in 6 months. Six??? You thought her symptoms were serious enough to yank the Doc into the room without an appointment, and you are going for six month follow up? The logic escapes me. Oh, and we aren't scheduling out that far, so call in 5 months to set that up (this scheduling practice is why it is so damned difficult to see this doc in a timely fashion).
Sigh. The transplant and the kidney disease are about the least of our problems right now.