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???|
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...|
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!