24 hours and counting...

My life has been a countdown for the past few weeks. We have all been waiting and hoping for the day that we can finish battling this Pseudo monster. We have been dreaming about a day where we don't have to worry about putting endless drugs into our little girl to just "try" and kill if off....

Wednesday is our magic day. Wednesday is when the PICC line comes out!!!

Madeline has done over a years worth of inhaled antibiotics, a week admission to the hospital full of iv pricks, blood draws, checkups, and OR procedures (picc line and bronch). She has endured another full week of home IVs 4 times daily with nebulizer treatments, vomiting, diarrhea, and little sleep from all the worry about what may happen to her next.

The truth is that she has fought this pseudo beast in every possible way. She has tried every single medical treatment there is for this bacteria including 5-6 different inhaled/oral medications at home and two different IV drugs. She has endured so much to get rid of it....and I am so incredibly proud of how well our strong 3 year old has put up with this....

We will not know if Pseudo is still there until days after our Wednesday clinic. The IV is coming out because the iv antibiotics that she is on (to try and rid her of pseudo) can have irreversible damage to her kidneys, liver, and her her hearing if she is on it for too long of a time.

We will find out if the IVs were able to get rid of this nasty bug by next Monday. The clinic will call us with the news of whether the culture is positive or negative. I have come to the point where I can deal with whatever the results are. The fact is that Madeline has done everything humanly possibly (medically) to get rid of it....so if the IVs didn't work our only option will be to try and keep it "managed"  at home.

This means doing inhaled medications every over month at home and going back into the hospital when the Pseudo becomes problematic at home (her breathing goes down, she gets sicks from colds etc and cannot recover, etc). It means that hospitalizations may  be more frequent and we will have to monitor closely how the pseudo could be creating damage in her lungs. Its all a scary thought....to think that that this stuff may just still be inside her and continue to grow/cause problems down the road. But the reality is that I am okay with the fact that WE have done everything possible ...

We know that what ever the culture reads we have done what is best for Madeline.  There will be no regrets that she did the IVs and it may not have worked.

But of course, we are so hopeful that our fight with Pseudo will be over very shortly and we can go back to our "normal" cf life that is managed at home for awhile....

Tomorrow,  I will wake up happy, and relieved. My little girl will get her life back. She will be free from upset stomachs and endless IV therapy. She will be able to live "normally" and to get back to  being her happy self again. She will be free of an IV!

I can hardly wait to have our lives back.....I can hardly wait to have my almost 3 year old enjoy life again the way most 3 year olds do. I can hardly wait for more smiles from her again.....

Updates tomorrow after CF Clinic!