Thursday, November 10

The Antibiotic Fog

We have begun to fall into a "Colistin, TOBI fog"....suddenly our life with all these inhaled antibiotics have become "regular" life for us lately. I think Madeline has even "adapted" extremely well to the LONG
treatments that follow all the other nebulizers. After sitting through 2 nebulizers (25 minutes) plus the VEST (another 20 minutes) she rarely tries to get up to "run away". She just seems to know that the last nebulizer is a part of her life now and has been for the 10 months really. I am incredibly grateful that she usually doesn't fight us too much on these added antibiotics but, a part of me is so sad that she has come to accept sitting for an additional 20 minutes as "normal" ....

This round has been different for us though. We not taken our usually "break" between antibiotics. We started Colistin and completed the month. Then, immediately began the TOBI. She has had no break in between antibiotics. Usually cfer's take a month off in between monthly rounds of antibiotics so that their body does not build up a resistance to them, but Madeline's doctors are hoping that by alternating medications with constant treatments it may just work killing of the Pseudo.

We are about halfway through this 3 month course. We finished Colistin and are a few weeks into Tobi. We will go back to Colistin in December to finish off the 3rd month straight of inhaled antibiotics. Then, after Christmas we will check back with the clinic to get a throat culture. That culture will determine whether it is time to admit Madeline to the hospital for IV antibiotics or not. This is the last push to beat down that beast that is brewing inside her and although I have a ton of hope, I also have some least with TOBI....

The Colistin seemed to make her cough (productively) but not with the TOBI. I have my HUGE doubts about TOBI. I know TOBI is considered (in  most cases) the best antibiotic for the treatment of Pseudo and it used as the #1 option for it. But I keep wondering.....what if Madeline's body doesn't think it is the best antibiotic for her body. What if TOBI just isn't right for her.....

And after doing a LOT of TOBI these 10 months to try and get rid of Pseudo....I have little faith in this drug.
It hasn't worked. And I am just hopeful that Colistin will finish off what TOBI couldn't help for the  last month... That maybe Colistin IS her miracle drug...

As the holidays approach I feel like I have HOPE written all over me. I am throwing everything I can into the idea that these constant 3 months of alternating drugs will be the magic for Madeline's lungs. I am focused on how exciting this would be if these drugs actually worked and less about what could happen if they don't. And I've given myself permission to enjoy the holidays and worry about the culture results afterwards....

....because CF may be in our lives but it will never totally control our lives.


  1. She is so darn cute! I hope the antibiotic work!! Keep up the good work mom! <3

  2. I'm so willling the colistin to work for M, everything crossed for you guys.

    If she does end up having IVs though, please don't look at it as being defeated as it may just be the thing that clears out the pseudo. IVs worked for us and kept Soph pseudo free for nearly 2 years before she unluckily picked it up again.

    BUT I have every belief and hope that the inhaled combo will work.

    She is just sooooooo beautiful!

    Hugs for you guys and sorry for delay in commenting! Must have missed this post!

    Take care xxx

  3. Sandy I think we just posted on each others blogs at the same time, what are the chances of that!

    With regards Cipro and inhaled meds here in England, it's supposed to be a gold standard of treatment but personally I don't think it ever did Soph any good and it was the IVs in the end that worked first round.

    We soon learn what works well for our little ones :)

    The home IVs aren't as bad as they seem now we have a routine sorted. Sophs so well behaved at home too which helps a lot!!

    Take care xxx

  4. Hoping Colistin works! ps. cute hat!


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