Here we go....Here we go....
Again. Again. Again.
Go away.....Pseudo....
We are now finishing up the 2nd inhaled antibiotic, TOBI to combat TOBI out of our 3 month round of antibiotics. As most of you know, Madeline has been battling Pseudo for almost a year and have tried almost every combination of inhaled drugs that are imaginable .....
The doctors suggested that we try 3 months straight of inhaled medications instead of taking a month off in between medications (as cfers usually do so that their bodies do not build up a resistance) to kill off Pseudo this way. We have been doing just that and through it all Madeline has been an awesome game player, star trooper, and a strong fighter against this bug. She has sat through over 3 hours of inhaled medications per day in the last 11 months and frankly it is getting quite OLD.....
I am as tired writing about Pseudo as I am calling familiar people now at CF Services Pharmacy to refill yet another prescription that costs the insurance $5,000 per month. These inhaled drugs are costly and the insurance is beyond tired of "approving" them for Madeline's care after 11 months. The insurance company has decided that they want to continually deny Colistin now after written attempts made my Madeline's doctors and the CF Clinic to prove that they drug is necessary to Madeline's health. So, it is obvious that the insurance, Madeline, and our family is so over Pseudo. You would think this beast would get the message?! But....I am not done fighting Pseudo....Not yet.....
Hopefully the combination of Colistin in October, TOBI (which we are finishing in the next few days), and Colistin again in December will give Pseudo a run for its money. And if it doesn't I guess I will have to wish again for Pseudo to take havoc somewhere else in 2012....
Because as sad as I am that we have spent time, money, and emotions fighting this beast.....I am very grateful for her maintained health. She has an amazing spirit and her energy is unstoppable. She is a true fighter and we are grateful that she has been able to gain weight
I couldn't be happier about that but if ONLY it would ......
just. go. completely. away.....
Until January (when we go back to clinic for a new culture to see if it still there) Madeline gets to to take all of the Christmas joys this year. She has already found a liking to dancing around Christmas trees for minutes on end, singing "Jingle Baalls", and excitedly running back and forth across rooms with her Santa hat on.
The truth is that Psuedo or no Psuedo- Madeline is happy!
(It's hard not to be happy about that!)
(It's hard not to be happy about that!)
Sandy - you have a great positive attitude and that is awesome. I can only imagine what a pain the treatments have been for all of you...especially her. 11 months is just crazy. I was over after just a month only with Bryce! I think of M often and I do pray that she gets rid of the Psuedo once and for all. She is such a beautiful girl!!
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