Tuesday, March 8

Goodbye TOBI?

I am starting to feel the reprieve of less treatments. It's as if I can almost smell it. This morning marks the last TOBI treatment for this 2nd cycle to treat Pseudo. I feel as though there is some relief in not adding an extra treatment to the already 4 we do daily. Just taking away one inhaled drug gives us all time to live life a little better.

I want to stand up and shout ," I am done with you TOBI!" but the reality is we don't know that we are done with TOBI quite yet. Usually children get sick and the doctor gives them a medicine to treat that sickness. Most of the time the child gets better from one round of medication and the child is feeling back to his/herself.

TOBI using the Trio device

As far as Pseudo goes and CF...it just doesn't usually work like this. We have been battling Pseudo for two months straight with one month off in between. (We give that TOBI a break between months in hopes that one, I don't loose my sanity and two, that Madeline's lungs don't become resistant against the TOBI since it is used so frequently during a CFer's life. ) We hope that one day one round of medication will be a SURE fix for this nasty Pseudo bug, until then...we wait and wonder.

Madeline goes back on March 25th for another culture to see if Pseudo is still hanging out in her lungs. Meanwhile, I am holding my breath that this IS the end of TOBI for Madeline for awhile. I am hoping that this short lived feeling of being done with TOBI will seem very clear when we get that call days after her culture saying." Her culture is negative. She is growing normal flora." Those are the words that I wait desperately to hear. Those are the words that make us all feel like we beat it. THAT is when I will be celebrating the true end of TOBI (at least for a little while...).

Our fingers are crossed that Madeline's current cold does not add extra side effects to her respiratory system. As always, thanks to all of you that are continuing thinking of us and holding us close in your heart.


  1. GL!! Hoping for the best during your next appointment!

  2. My fingers are crossed for you and Madeline too! Rylee got the all clear on monday! We are done with TOBI! YAY! I hope the same for you as I know how much the additional neb is dreaded. :(

  3. Keeping everything crossed, I know how important this is and how easier life is without the extra treatments, although it's been a while for us!

    Really cute picture xx

  4. Fingers crossed!! Zoey is just finishing up her 3rd round of TOBI. We go back on April 5th. I think after awhile it just becomes part of the routine, you may feel like you are missing something. :) ha ha ha!

  5. Thanks for visiting my blog! I was going to tell you that I looked at your house pics on FB and was/am really jealous of all of your sod! I even showed Josh how much sod you have! Dorky! Is the hardwood going to be better for Madeline?


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