Friday, March 6, 2015

Bad News ~ Good News

A cheery picture with bad news. The kids made
all these hearts to decorate for Addie's St.
Valentine birthday.
 A week after Addie turned three, we received the dreaded pseudomonas call. Her throat, and probably lungs as well, was growing a bacteria described as a "free ranging, oportunistic human pathogen." It is strong, adaptable, and everywhere. It particularly likes CF lungs with all the extra mucus and inflammation and weakened system. When it's been there a while --scientists think over six months-- it forms a biofilm around its community (I hate that they use such a human word for this nasty creature) that is impenetrable. If it gets stirred up at this point, all antibiotics can do is to knock it down; so far, no one has figured out a way to dissolve the biofilm and kill the bug. This is, of course, my layperson's understanding from a doctor that has drawn diagrams on paper towels for me for years.

 But since this is her very first positive culture for pseudomonas, she is eligible for a new drug study that tests whether or not hitting her body with two different antibiotics, one inhaled directly into the lungs and one swallowed, will eradicate it, at least for a little while. Dr. Bonnie Ramsey runs the OPTIMIZE study, funded by the NIH (yes, the feds). So now we've added another nebulized medication twice daily and another liquid medication to be given three times a week (Oh Brain, please remember). We're now in the market for a car- battery-electricity-adapter-thingy so that we can hook up the compresser and administer the meds while out and about.

So. Breathe baby.
I hate making cupcakes, you guys.
But she loved them.

And you are three!

You wanted lemon cupcakes and lemon ice cream. You got a bright doll, a tea set, and another paint book. One brother crocheted you a scarf and others made you paper puppets. Everyone was thrilled to make colored
hearts and decorate spaces with them. You slept in your purple jammies from your grandparents in your pretty tent from your godparents. You bestowed favor upon your adoring subjects by choosing who was allowed to join you in the tent. I had to make a chart, friends, to make sure no brother was left out and no brother got extra time (Clare's too big to sleep in it.). Goodness.

The wall over the mantle.
 You are our sparkling jewel and our softest sweetie. Your laughter brightens everyone's day, your smile is contagious, and your kisses are from heaven. We are so proud and grateful to be your parents. Happy birthday, Adah Marie.
Puppets made by Luke and Joseph.
The scarf made by Ian (my favorite gift!).

Love, Allison


  1. Bad news, sorry to hear that! My son started culturing it around 1 yr old and we did inhaled TOBI and azithromycin 3x/week (I'm assuming this is similar/the same as what you're doing based on what you said above) and it took about a 1.5years to get rid of it. He's been negative for over a year though, although who knows how reliable those throat swabs are at 4 years old haha. Good luck, hope it works for ya!

    1. I had no idea it could even be eradicated at all. Rees has been colonized his whole 20 years. When they found it at 9 months old, he'd already had pneumonia twice which prompted the sweat test and diagnosis. And OMGoodness, those throat swabs. The doc sticks in 2 at once; I don't remember why the study required 2. And yes, those are the drugs!

  2. God bless your precious girl, be assured of our prayers...

    1. Thank you very much. It's so hard to explain to her why there are more meds.

  3. No words. Much prayer. Always gratitude. Always grace.