Tuesday, May 3

Trying to believe...

 Madeline's 28 day supply of Cayston (her inhaled antibiotic to treat Pseudo) is officially done. I have some crazy mixed emotions about this though. Initially, I was extremely excited that we can have more of a  life now- with one less treatment to do during the day. But  then I feel the irrational panic of what could happen now that they meds are done....

Now, we will go for almost a month without anything treating this bug and then return to clinic for the dreaded culture swab. (CFers usually take off a month from the antibiotic so their body does not build up a resistance to these drugs since there are so few drugs that can treat Pseudo.)

So, My mind is playing evil tricks on me. I have been imaging the PA running around her lungs creating havoc now that the Cayston is stopped. She's had pseudo for 6 months straight.  I have a hard time thinking about when her lungs will say "Enough is enough.." Isn't that what all CF moms fear? When the going gets to be too much..and there isn't much more WE as moms can do. I worry about that defeated feeling....

I am beginning  to wonder if Pseudo has decided it wants to stay in her lungs f.o.r.e.v.e.r.

Don't get me wrong-This Cayston stuff is amazing! It nebulizes easier and cleaner. It takes half the amount of treatment time as the TOBI  to nebulize (2 minutes as compared to 4 minutes). Madeline actually likes it.She holds the mask to her face even after the treatment is done.(I can only hope it makes her feel better.)It makes Madeline cough at times....helping the Pseudo clear out of her lungs better....

 But....as much as I want to believe that Cayston is Madeline's magic drug that will rid her of this nasty beast, I also realize that Cayston is the only other drug we hadn't tried besides IV antibiotics to kill the pseudo. We are checking off all of of options of  the list to treat this thing.  So, if this doesn't work and the culture comes back positive, then what???

I hate it when it feels as though your options have been tried and tried again...

So, in the meantime I am trying to believe that Cayston has already worked  either by eradicating or lessening the amount of Pseudo.  I am trying to believe this so my mind doesn't wander....because really Madeline looks and acts healthy. In fact, no would could believe after spending the day with her that she is battling this bug.. She is still her amazing, funny, and happy self...


  1. Believe it will be gone! These times are hard... when your child is sick. Riley hasn't had PA, yet. And I can't imagine the feelings your feeling. I freak out when she gets a little kid cold.

    I'll be thinking and praying for you girls! Hang in there momma! Be strong for your girl and yourself.

    PS. love the water color picture! it's beautiful! <3

  2. Ugh....I COMPLETELY know what you are feeling. Rylan had PA three times in a 2 year timespan, and after each round of TOBI I went to battle with myself....BUT, the good news is we did finally eradicate it. So, it CAN be done! Just stay positive, easier said than done I know :)

    Just curious what nebulizer pieces you were using with the TOBI? We were instructed to use the Pari LC Plus and it took 25 minutes!!!

  3. Ugh that nasty bug. I bet it will be gone this time, I heard Cayston works really good even when TOBI doesn't.

  4. Ugh, I completely get where you are coming from Sandy and I echo the same fears. I almost hate to stop Cayston for fear that the pseudo isn't gone and it's just going to get worse. When do you go in for a swab? Or should I say, when does Em go in?

  5. It's a hard battle that's for sure. I really hope all of you gys can clear mr p out for good. The feats are completely normal and I think we've all been there.

    Try and enjoy the break rather than focus on the fear.

    Take care and sorry for lack of comments, blogger has been naughty!


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