Saturday, June 4

Results are in.

Madeline's doctor called today to give us her culture results. It's been a full week since the culture was taken and Jack and I have had mixed emotions about what that means. Our mind plays tricks on us based on what we know. No word from clinic could mean good news or could mean that they are debating what to do next. Time is a killer when it comes to culture results for CF patients and their families. It's a long waiting game that makes you throw your emotions all over the place. What will this result say? Will it be better? What if is really is gone? Suddenly all the "what ifs" come flying you at one time. So today it was....

It is still there. That nasty beast is somehow still there.

We just finished up our 3rd round of inhaled antibiotics (with one month off before starting the next dose) This will mark nearly 6 months of a war with this nasty beast and after all this time it finds a way to still stay there.

And because it still is there  it makes my mind go in crazy motions. When we got the news that Madeline had cultured it in December, Jack and I almost felt like we were defeated and shot down. This was the bug that we had been trying to avoid since we first learned Madeline was diagnosed with Cystic Fibrosis. All my mind could think about was the irreversible damage that this bacteria can have on a CFers lungs, how incredibly hard it would be to get rid of, and of course how I had somehow failed in not making her environment more sterile. It was simply devastating...

After round 1 of inhaled TOBI I became hopeful that we had the best chance at getting rid of Pseudo because the growth on her culture was "moderate." The doctors were optimistic that she was gaining weight well, was not symptomatic, and could just plain beat it all. the. way. Results.. came in that said "very slight growth." Clearly we had kicked it pretty good and it was possible there was just a little left....

After round 2 of inhaled TOBI results came in...."slight growth". Clearly it didn't get better. I was loosing hope that we were going to kick this at all.

Round 3, it was suggested that we try a new drug that was just put on the market for CF patients battling Pseudo called Cayston. It usually is not given to children under 6, but Madeline's doctors felt like they needed to switch up the meds since it appeared that TOBI wasn't killing off  the Pseudo as much as they had hoped. We felt a little optimistic that maybe this WAS the drug for Madeline. This would be one that her body would  respond to....

...results came in this Friday..."very slight growth."..and here we are. We were also told that Madeline's type of Pseudo is resistant to Cayston. (which we just used last month). This means that TOBI (the drug we used for 2 rounds in the beginning) is the only drug that has a chance at killing it off... I have begun to choke down the reality that we may never get rid of Pseudo and that it may stay there forever... which if often can do. But it isn't too often that children as young as Madeline keep it and cannot get rid of it at this age.

CF has an amazing way of making you feel powerless and that is exactly how I would describe my relationship with pseudo. We are trying  to defeat this beast but, the options are simply running out. My worry has begun to turn to acceptance. I have begun to accept that I cannot control this nasty matter how many times I wash her hands, give inhaled antibiotics at the targeted times, and simply do everything I can imagine to protect her from this bacteria that is just. plain. everywhere. It's hard to swallow that you simply cannot "fix" your child. As moms, it seems that is our "job."

 I have begun to accept that we are on a weary road again of so many "unknowns" and we have been lucky enough to have almost 2 straight years of "managed CF". And now we are getting ready to "fight" again.We will do 3 more rounds of TOBI. This will add 25 minutes twice a day to her already 2 hours of treatments. She will spend nearly 3 hours per day sitting and doing treatments thanks to Pseudo. I wish I could "fix" this part too.

If things get worse in the next few months and she develops symptoms from Pseudo she will be admitted to the hospital. If after she 3 rounds of antibiotics she does not get rid of this nasty beast, she will also be admitted for IV's. We are running out of options and right now I can only hope that the next 3 months will bring something magical to her lungs.

We are in for the big fight. I may accept that I don't have control of Pseudo but, I will not stop fighting for Madeline. Thanks again to all of our family and friends who continue to ask questions, inquire about Madeline, and lets us know that we are not alone. Our strength comes from you....


  1. Oh Sandy...I'm so sorry. Like you, I was hoping for a different outcome. You have prayers coming your way to get rid of this pain in the ***!! Always thinking of you guys...hugs to everyone.

  2. Ugh...Sooooo Sorry....I totally relate to your powerless feeling although we were battling MRSA and not PA. It is just the worst feeling because we do so much every day but still....these bacteria come and we can do nothing. It's horrible. But please stay hopeful. Aidan had MRSA for over 3 years but lately has been culturing negative even during sinus surgery. I've heard people who have PA but can keep the growth light to prevent any major problems. It still stinks no matter what. Try to hang in there and I will pray for positive results in the future. Megan

  3. Sandy, I'm so sorry about the culture results. This disease really sucks and I'm sorry your family has to go through this. All we can do is keep fighting the fight. My thoughts are with you all.

  4. Awesome valiant post. It's so devastating that you're still fighting pseudo. But I appreciate your sharing the range of your emotions - from dread to fierce anger to acceptance. We will be there one day and I will pull this post up to remind me I'm not alone. I can imagine myself feeling the exact same way. Keep fighting our your girl!

  5. You guys are in my prayers and I think about you all the time. You are an amazing mom and Madeline is lucky to have you and Jack fighting for her. Much love from our house to yours.


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