Tuesday, September 27

Intense Colistin....

Yes, that is the name of Madeline's new inhaled drug- Inhaled Colistin. It sounds rather simple. After greeting the UPS guy at my door today, I forced myself to break a smile to say "thanks." At least there is another drug out there that may help Madeline beat this Pseudo. I am hopeful for Colistin but, it doesn't take the sting away that this fight is just beginning. We have done (inhaled) TOBI and Cayston....Colistin is only inhaled drug we haven't tried and learned....

And when I say "learned"...I mean it. Each of these inhaled drugs come with a list of directions. Some are administered cold, some are given twice or even three times a day, some may have a specific nebulizer to use, and then there is one that has to be mixed with a syringe.....

This is when I started to think that Colistin is intense..... (maybe a little overwhelming is the way to put it)

To mix your daily dose of colistin:
1. Remove the lid from the colistin vial.
2. Remove the lids from the sterile water and saline vials.
3. Swab the rubber top of all vials with an alcohol swab before inserting the syringe.
4. Draw up 2mL of sterile water for injection into a syringe (always use a new syringe with each treatment preparation).
5. Inject 2mL of sterile water into the colistin vial, while gently rotating and swirling the bottle (to prevent foaming) until all the white powder has dissolved. DO NOT shake vigorously.
6. Withdraw 1mL (75mg) of the colistin and place it into the nebulizer.
7. Draw up 2mL of normal saline and add into the nebulizer.
8. Place the remaining mixed colistin (1mL) into the refrigerator for future use.
9. Discard unused portion after 24 hrs.

Then, Madeline will take it by nebulizer for 20 plus minutes (added to her  already existing 40 minutes of VEST physical therapy and other nebs.) Maybe this is the miracle drug for her....

For one thing I will be learning a lot.....

And we will be getting another vial of Coliston for the Cystic Fibrosis Services pharmacy after seeing

One glass vial of Colistin broke on the UPS truck.
Day 1 of Colistin is coming.  I will learn as many inhaled medications as I can and go through intense Colistin just to help my little girl get better....


  ....please be Madeline's miracle drug.
We have hope. Lots of hope.


  1. This is crazy, Sandy. I appreciate that you document this process for us. We will likely not be too far behind you in going through the same process. I think it's just inevitable and a matter of time. But I pray it will be a bit longer. Sorry this is so hard. Wish I could take it away from you.

  2. We made it through Colistin and beat a couple nasty bugs including psedo. I can't even begin to sugar coat it. It really stinks and so hard. Prayers to you...

  3. oh my gosh. they should send an instructional dvd with this. did they? I'm praying this works for your little girl! Big hugs to you all.


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