Sunday, July 31, 2016

New Use for a FitBit....

Babygirl's most recent visits to the doctors were generally productive and reassuring.  Driving in the Philadelphia area during the Democratic National Convention, less so.  All of the trucks seemed....confused.

Nephrology had nothing new to say.  They scolded her for missing doses of medication (how does that even happen? I wake her up EVERY DAY and she has phone alarms.  It's the morning pills this time, two sets still in the boxes when she sorted.  UGH).  The kidney is doing well despite this, with a creatinine of 1.05, about average for her lately.  The headache medication still have her a bit too acidic but they decided that taking 14 bicarbinate tablets a day was about the limit.  Fourteen.  It's a lot of sodium, seriously.  So, lab work here in six weeks, and see you in three months in Philly.

Gyn had nothing new to add.  We were overdue by a couple of months there.  Dr Z of course took Babygirl aside alone to question her ("Why do they always ask me if I feel safe??" she asked me later.  "Be glad that question puzzles you," I replied.  "Oh.").

Neurology talked Babygirl into the full 31-injection set of Botox.  Watching this provider do the injections, compared to the CHOP provider, it seemed that she was more organized about her approach, or perhaps it was that she just talked more about the logic of the shot locations as she worked.  The really interesting thing was that I didn't need to order the Botox from our specialty pharmacy and have it shipped to Nemours/Dupont hospital ahead of time (copayment:  $300 each time CHOP had us do this!).  These folks just pulled the vials out of their fridge and gave it to her.  It will be part of the bill for that day, so it will be interesting to see how that plays out.  I did call our insurance company ahead of time to check on this, and they weren't sure WHY CHOP had us send the medication in like thay - they would have paid for it as part of the service.  Dr P, our new neurologist, tells me that they get the Botox for about $100/vial.  Since they use 2 vials for Babygirl's injections, the total cost MAX would be $200, so what the heck, CHOP? Could I have my extra $200 back?? Just one more reason that I'm glad we aren't going there anymore.

One of the big problems for people with migraine is sleep. Babygirl routinely reports poor sleep, so Dr P asked me to put my FitBit on Babygirl at night to see how much sleep she is getting, which is a creative approach to data collection. I've also made Babygirl commit to turning off all electronics at 11 PM whether she is having a hard time sleeping or not.

We are to update neurology in 2 weeks with a headache report and sleep data.  And then we'll see.


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