Monday, January 27, 2014

Week 23: The golden shovel

It feels as though I did very little this week other than shovel snow, but if I push myself I can recall a few other scattered moments...

Last week, we'd heard our insurance had declined to cover Lemon's last two doses of Synagis, as we had sort of expected.  We'd appealed the decision, though, and were told that if we wanted to we could participate in the appeals board's discussion via conference call.  Our understanding was that we could listen to the board's conversation, and then when called upon we could add our two cents.  Papa Bear and I did some reading the night before the call to refresh our memories on the current research on Synagis and CF so that we would be ready. 

My phone rang at the expected time, and we were ready to listen to what the board had to say, and then speak our piece.  As you can imagine, we were very surprised when the woman organizing the call just said "Hello, do you have any comments for the appeals board as they consider their decision?"  Even though we were a little surprised, I think we managed to spit out some vaguely coherent sentences about continuity of care, and that the lack of clinical data on Synagis and CF is due to CF being a rare disease, not due to a lack of efficacy of Synagis in CF patients and so forth.  As soon as we were done, the woman thanked us and hung up.  We have no idea who (if anyone!) was even listening to what we had to say, or what they thought of our comments. 

The good news is that we got a call back a few days later saying that we were approved for the two additional doses that Lemon was scheduled to get this year.  Phew!  The insurance company said there's no guarantee that they'll approve Lemon for next year, but I just said what I honestly feel--we're taking one winter at a time.  I also found out that unlike in Boston, where Synagis was given in a quick visit at the pediatrician's office, here it's a 90-minute visit to the pulmonology department at the hospital.  I'll save the description of why that is for later this week, when I'll be trapped in an exam room with a bored baby for no reason other than general inefficiency...

On Saturday, we went on a little field trip downtown to the indoor winter farmer's market, which is extremely lively.  Even though it's the middle of winter, the market is still jam-packed with extremely tempting stuff, and I had to be strict with myself to only spend the amount of cash that I'd allocated.

After the farmer's market, we went to the public library to register for library cards.  It turns out that the main library has its own chocolate shop inside--what could be better?  If you're there, try the Parisian hot chocolate--it's very small but packs a wallop.

After finishing my interviewing process, I hired someone to watch Lemon when I go back to work starting next week.  I'm very confident in her abilities, and she actually started today so that we have a week where she and I are both here to help smooth out any kinks.  She's very calm and experienced so I have every reason to think that things will be fine, but of course I'm still nervous.  I have to keep reminding myself that I had no special training that enabled me to open enzyme pills or look at baby poop before Lemon was born, so there's no reason that she can't pick it up quickly.  I had to leave the house for a few minutes right after she arrived to drive Papa Bear to work, and Lemon was asleep so I was telling her what to do when he woke up, and at some point she said, "Don't worry.  It'll be fine.  You'll be back in 15 minutes."  And it was fine.  So later in the morning I went to Home Depot.  Don't tell me I don't know how to have a good time.

In other news, the cats have completely adapted to their new home--I think they've totally forgotten that they ever lived anywhere else.  I can hardly say the same for myself, but at least this place is starting to feel vaguely familiar, and a little bit less like some weird parallel universe.  It's certainly not home, but it's getting there.

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