New Nebulizer & TOBI

Judith's nebulizer came earlier this evening - a relief for me, because I feel better starting her treatments ASAP!  I honestly didn't expect the semi-fiasco we went through to get the thing.  A bunch of phone calls and 3 medical supply companies later, we were finally set with the proper nebulizer and all of the supplies we needed.  I picked up the TOBI earlier in the day, and it's been sitting in the fridge ready to go.

The insurance companies did end up buying the neb straight out of the gate, instead of doing a rent-to-own type of deal.  To me, that's the most logical move for Judith since it's likely we'll be using it more often in the future and whatnot.  For once, the insurance company agreed and thought logically ha ha!

Her mask is super cute - it's a fish, and I think she'll like to look at it!  I'm hoping that she'll adjust to it quickly.  She generally does well with her inhaler and spacer, so we'll see how this goes.  Tonight should be easy though: I'm definitely waiting until she's conked out for the night before giving her the first treatment!  Tomorrow, on the other hand, should prove to be interesting.

I would like to take a moment to state how grateful I am that John's work provides the option of a good insurance plan, and that the United States government is, at the moment, providing funding for Medicaid.  I can still remember talking with the social worker at our second appointment after we got Judith's diagnosis: she said that no matter how great your primary insurance coverage is or even how much money you make, it's important to get your child with CF on Medicaid to help cover the cost of treatments and medicines.  That has stuck with me for the last year, but today is when reality really sank in.

The nurse coordinator did mention over the phone that the TOBI would cost a couple thousand dollars, and double checked that we have Judith on Medicaid.  I said yes, that we applied after we initially got the info and have had coverage for almost a year now.  So I had an idea that the cost of this drug would be high, but we shouldn't have a copay (or much of one if we did have to pay).  On the drive to CVS, I reminded myself to check out the original cost of the meds, something I actually do for most of the meds we get for her because I'm nosy like that.  I went back to the counter, and the pharmacist handed me the bag: a big, brown, paper bag instead of one of the normal small, white bags - I knew we'd be getting a lot of medicine, but I didn't quite expect the pack to be quite that large.  Anyway, I made my purchase, and on the walk out of the door to the car, I looked at the "before insurance" price on the patient info card:

$5,274.52

That's right, folks: that's a comma and 4 digits between the dollar sign and the decimal point!  Your eyes are not deceiving you!  And that's only for a 28 day supply of 56 vials (since she gets it twice a day).

This is why the social worker said CF patients need the extra coverage.

Now I'm waiting for the statement to come from our primary insurance showing the breakdown of the costs for the nebulizer.

Tax Season

I'm pretty proud of myself: this year I finished the bulk of our taxes on my own!  Granted I used Turbo Tax, and selected the option to guide me through everything, but I feel like I need a pat on the back anyway.  My mom helped with the local tax and with some parts I wasn't sure about doing (attempting to claim the shitton of medical bills from last year, for example... and we still didn't have enough to claim it even though the amount we paid out of pocket is asinine, especially given our income - thank God MA picked up as much as they did!).  Now we play the waiting game, and I'm hoping the IRS deposits our return into our account quickly.  I'm pretty excited to get this money, because we have enough to do what we wanted plus pay off the remainder of Judith's NICU bill!  I know this is kind of AW-y, but I just can't express how much relief I feel knowing that we won't have that hanging over our heads any longer!