It was a hard decision.
But it seemed worthwhile to calm my headache and try to find out the results sooner than later...
All along I have been thinking it would be a really nice if Pseudo gave us just a little break this time. After two rounds of TOBI and Cipro....we were all hoping for the best and expecting the worst.
My husband and I had our bets. The chance that the Pseudo was still there = 75%. The chance that it was gone= 25%. Those numbers show exactly how we were expecting the worst. Of course, we were hoping for the best....
But, the best is not the kind of phone call we got.
The nurse called to let us know that Madeline is still culturing
pseudo. I had a hard time hearing this news, keeping in the tears, and just plain holding myself together.
But somehow, I did.
After a long talk with the nurse she explained that trying a 28 day supply of Cayston, another inhaled antibiotic that works very similar to TOBI was what the "Hopkins CF Team" thought would be best. (Check out Margaux's blog by clicking here to learn about Cayston. She does a fabulous job describing Cayston. We are both on a similiar journey...due to this nasty beast!)
Cayston was developed about a year ago and is a brand new antibiotic that works to treat Pseudo. It has not been tested for safety in children under the age of 6. But with any of these medications, you take your chances. As a mother of a CF child, I have to weighMadeline's risks. She has Pseudo in her lungs that could potentially be damaging her lung tissue....I would rather try a medication that can treat that then worry about it's effects.
We are hoping that Cayston may be the medication for Madeline. Some people do not respond well to TOBI and this may be Madeline's case. We will complete the 28 day supply, wait 2 weeks, return to clinic for another culture. We are starting to feel the "STABBING" nature of this war with pseudo. This is becoming too much of a routine...
Pseudo and routine should never be associated with each other. The reality is that we must get rid of Pseudo sooner than later. Once we have expired all of our options, we will be admitting Madeline for IV antibiotics for a 2 week period. We hope that other methods work but as of now this is our plan.
Today, our family is regrouping our thoughts, taking a deep breath, and hoping for a better day tomorrow.
We feel a little defeated but ,we know our fight isn't over.
Tomorrow we will start all over again in fighting this terrible beast. We will put our emotions aside and jump in yet again because the fight isn't over until Pseudo is gone or a cure is found.
Please consider donating to the CF Foundation this month in Madeline's name. We need YOU.