Friday, December 10

Ugly Word.

The ugly word.

The nightmare...I hoped that I could avoid...for at least a few years...


It's hard to type it and watch it appear on my blog for the day.

I thought this was the ONE thing that I had beaten with CF. I thought that the least I could do was keep my
girl from being "psuedo free" even if I couldn't take CF from her.

Today I realized through all my tears, that I have really no control over this disease.

That is a hard pill for me to swallow.

Even my OCD of cleaning, washing hands, going through antibacterial wipes, using the germ guardian to sterilize all nebs for the 2nd time after microwaving them....just didn't work


Yes, I was determined to "control CF" in the best way I knew how and even that just didn't work...

Those three words sting: just didn't work

We CF mamas always say that "we do the best we can" but we can't blame ourselves for what our children culture.

As a mom, that is a little hard to do...Aren't we suppose to protect our children? Keep them as healthy as possible?

In my heart, I know that I am not at fault and no one is. That doesn't make it any easier though that Madeline cultured it.

Because really in my heart, I know I was on a little "high" believing my my make-believe world that I could be the protector and somehow shield Madeline from PSUEDO.

It sounds ridiculous...but I set extreme goals for myself.

and it just didn't work...

Of course, it didn't work!

It shouldn't have worked and I set myself up for feeling like this.

So my draining day started when....

The doctor called today to let us know that Madeline cultured a "moderate" strand of Psuedo. They believe that she may have just cultured it in her throat/main airway since she is not symptomatic. She DOES NOT cough. The only worries that they have is her weight. From the last visit she did not gain but a half of a pound in 3 months. Her doctor mentioned that this strand is very senitive to antibotics like TOBI. We are hoping that after our 28 days and our return clinic visit that this will be good riddance, Psuedo.

Double fisted pacifiers anyone?!


  1. So sorry about the culture result. It is so maddening how much we do yet we cant protect them from some things. AIdan cultured MRSA two years ago at the age of 4 and I cried for days. I was devastated.

    Have HOPE! I was just at the National Conference and you can eradicate PA if you catch it early. So I bet she will beat it!! Hang in there. megan

  2. Sandy - the EXACT same thing happened to Bryce last February. I know exactly how you feel and really there is nothing you didn't do or could have done. Bryce also cultured a moderate strand and between the 28 day cycle of Tobi and 2 weeks worth of Cipro he got rid of it! It hasn't been back since!! We will pray that the meds to the trick and M gets rid of the nasty dirty old P word.

  3. sorry about the pseudo. keep your head up and know that you did nothing wrong!!

  4. oh and I became a follower of your blog, follow mine too! I will look you up on facebook, I do networked blogs there too! I will put you on my blog list.

  5. Sandy ((hugs)) I won't repeat what I said over on cystic life, but you know where I am if you need a good 'chat'.

    Take care


  6. Ugh, Sandy, so sorry to hear this. I know that words hits you like a ton of bricks. Ben has cultured pseudo a couple times but it took IV antibiotics to get rid of it. The good news is yours is sensitive to TOBI and I hope a month of it clears it up.


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