Wednesday, February 2

Culture results....

The results came in earlier than expected. I wasn't expecting to hear anything until Friday. I decided last week that I would let the Clinic call me instead of trying to call them. The news was going to come good or bad and I just wasn't going to get myself hyped up about making the call.

The call came in today.

Most of the time it seems that no news is good news as far as CF culture results go. So, once I looked at my phone and saw I missed a call from the clinic, I had already figured that this wasn't a good sign.

Before listening to the voicemail message, I had a tinge of hope that maybe they were calling me early with good news. There is always some hope mixed in with worry/anxiety as you await news that tells you how your daughter's 23 month old's lungs are fairing. I was holding on to that hope today.

As I replayed the message,  I could tell by our RN's voice that she was in "comfort mode" before she even said the words. My hope slipped away a little.

I sat in the family room shell shocked. I didn't cry. I didn't call back the clinic immediately. I just sat in silence for a few minutes. I waited for my body to react. I waited for myself to loose it. I digested the idea that she was still culturing pseudo. I went through the process of taking it all in. My inability to do anything was my way of trying to accept this new news.

After taking it all in, I felt the tears pour over my cheeks for a few minutes.

That was it- I was done for the moment. It was time to fight the big fight.

After trading missed phone calls with the clinic, I was able to talk to the RN about Madeline's results. She confirmed that her results showed a "very light strain" of Pseudo compared to the previous culture in December witch was "moderate." I felt so much hope coming back to me. She mentioned that is was a "lot less lesser" pseudo than before. We both half laughed.  Including the word "less" twice in the sentence seemed awesome...

So the plan is that we will repeat all medications again in the hope that we will get rid of Pseudo completely. Madeline will begin taking Cipro again as her oral antibiotic, as well as  inhaled TOBI. The best part is that Madeline will be using a new kind of nebulizer called the Trio that was recently developed to deliver her inhaled TOBI faster. It will take her about 5 minutes whereas before it was taking her 25 minutes to complete the inhaled TOBI with a standard nebulizer.

Even though, the results were a little defeating, I am ready to fight, yet again. I know that my "chunky"
(82percentile) little girl looks incredibly heathy, acts like she is feeling great, and  is not coughing. Her "healthy" weight and her strength will pull us all through this. There is a lot of encouragement knowing that her strain is "less" than before and that she may just need another go' around to kill the little beast that has taken up in her lungs.

I hope Pseudo got my message. Let the fighting begin...


  1. What is this Trio and how can I get it? Zoey hada negative culture but we expected it since the culture was too soon after the TOBI cycle. We have to keep doing TOBI cycles till April when they will culture again. 5 minutes for TOBI would be awesome.

  2. So sorry to hear that the Psuedo is still there! Big hugs! I could feel your pain as I read about the phone call - I have been there for the past year waiting for that dreaded results call! The good news is the growth is lighter so the TOBI and Cipro are worth the pain! Our clinic makes us stay on TOBI until we have three clear cultures in a row! We haven't managed that as yet, so the fight against PA continues! LIke I said to Margaux, you too can unfortunately join my I hate PA club! Glad to hear Madeline is doing well otherwise - she is a doll! Hang in there -you are doing a great job, love your blog! x

  3. We love the Trio! Ben was on it before and it saved so much time. Hoping Ben and Madeline can both kick pseudo's butt!

  4. Oh, bummer that they are back - But exciting about cutting treatments down with the trio - Rylee is on tobi right now and her treatments take her about 25 mins too. My poor little peanut sits in her nebs for over an hour. I am going to have to inquire with our clinic about the trio. Here's to all our little fighters with pseudo and kicking that junk out of their bodies!

  5. I am so excited that I found your blog months ago. It always seems like y'all are one step ahead of us. I mean I am not excited about our little ones having MR.PSUEDO but you know what I mean. LOL!


Thoughts? Comments? Your comments help us stay strong!