Tuesday, December 14


So after Madeline's culture results on Friday, we were told by all pharmacies that we would need to wait until Tuesday to actually get the TOBI(inhaled antibiotics).This was a little unsettling knowing that Madeline had the Pseudo in her yet, we could not start any meds until Tuesday. Thus, we would just have to WAIT...

I anxiously awaited the FED EX truck today, worrying that I might not hear the doorbell. After all, this medication only cost $4443.00 for a 28 supply (without insurance) so the lady from the Cigna Home Pharmacy reminded me I would be responsible for the cost if I was not available for a signature at the time of delivery. I also felt like I needed to hug him when he showed up at my door. There was some sense of relief and less anxiety knowing that the med that may eradicate this bacteria was sitting on my doorstep. I shouted "Hooray" as I flung open the door to greet the FED EX guy. He kind of stumbled on his words, not really sure what to say to my "Hooray". I am sure he thought I was probably down right nuts. I really could have cared less...TOBI to my rescue....

Notice all the crazy label on this EXPENSIVE med???
Since it is a refrigerated medication, it came packed with TONS of ice packs and was very cold when I got it out of the box. It is nice to know they take pride in trying to take care of a medication that costs nearly $5,000.00.
(Thank goodness our co-pay is under $50!) This is when you are so grateful that you HAVE insurance for your family!  

Madeline will get TOBI twice a day, once in the morning and once in the evening along with the rest of her inhaled medications. It will add an extra 25 minutes to each treatment time. This means that Madeline will spend nearly
 1 hour and a half two times a day sitting still with a nebulizer in front of her face. That is 3 hours per day of sitting still for a 22 month old. Somebody save us!!! I feel for her and all the cfer's that do these treatments every day just to keep their lungs healthy.

Through it all, Madeline did very well tonight. She sat so agreeable for that hour and a half while we added in the TOBI. This upcoming year would be a great year for a "CURE" for Cystic Fibrosis. We are hoping that 2011 will bring many promises for the upcoming VX-809 trials...which could potentially lead to Madeline and others taking a "pill" to help "fix" the problems in her body that made CF affect it so poorly.

Doing TOBI , after an hour of  inhaled treatments and the VEST...
 So, if you haven't already. Head on over to the Cystic Fibrosis Foundation  http://www.cff.org/ and donate today to help Madeline and others find a sure this holiday season. Stay tuned in the beginning of 2011 we will be forming a walk as a part of the GREAT STRIDES, Walk for a Cure from the cff that we do every year in madeline's name.
We need LOTS of walkers this year and plan to do it here in DC. We will be in touch with dates shorty.

And thank you again to ALL of our friends and family that are keeping Madeline in your thoughts and prayers during this time. We have a lot of hope that she will be able to kick Pseudo's butt! Your support means so much to all of us!


  1. I'm so pleased it has arrived!! Love your door response :)

    Here's hoping and willing it to kick some serious butt! She looks so grown up in that picture her hair is beautiful!

    Take care thinking of you all x x x

  2. Yippee, you got yours fast. My insurance dragged their feet and it took us three weeks to get it. YAY. 27 more days and counting.

  3. Madeline is awesome putting up with that mask! We'll be thinking of her the next few weeks!

    ps this is caitlin... I am not starting an account, so I have to post anonymous!haha

  4. Glad you got the meds and so happy to hear she didn't fight with the treatments. I have a good feeling that in approx 30 days you will be hearing the great news that she kicked Pseudo butt. :) Hugs.

  5. oh such good news so far! matthew and i have been praying for you guys and so has my sunday school class and the prayer group at my old church in tennessee. loving some madeline!! xoxo michaela


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