Yesterday, we began the last month of our prescribed 6 month treatment of the inhaled antibiotic Tobi. It has been five months since Lucy first cultured mucoid Pseudomonas Aeruginosa and has not cultured it since then! The results from the culture that was done on Thursday, May 13th at clinic should be in some time at the end of the week, and hopefully there will be no sign of PA!
If there is no sign of PA on her culture, in 27 days we will be done with treatment, for now.
If she does culture PA again, we will probably have to continue with another 6 months of Tobi treatment, until it is gone!
Once a CFer has PA, there is always a battle with it, coming and going in their lungs. Lucy also has colonized Staphylococcus Aureus. It has permanently made a home in her lungs, but we only treat it if it starts showing symptoms.
I will be more than happy to wash my hands of Tobi when this 28 day run is over. I have this love-hate relationship with it, for sure. It adds an extra hour to our nebulizer time everyday, but the benefits of using it is tremendous. It keeps Lucy lungs healthy and that is all I could ever ask for. Lucy actually loves to wear her mask and asks for it even when it is not time for a treatment! She loves the extra hour of her PBS programming that she gets to watch when she has her mask and vest on. Her favorites are Caillou and Dragon Tales... and thank goodness for On Demand TV that allows me to play those shows 24 hours a day for free!
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