I haven't posted for awhile because I'm struggling to express myself right now. It's difficult to put all of my emotions into words, especially when they float back and forth from optimistic to downright devastated. These feelings I have been feeling, just swarm in and out of me and leave trails of debris, like flea feces. I can sense them, even when they are gone. The thing is- I'm not the first to feel this way. Words have already been written, trying to express this turmoil and I've opened the door to this realm before; here, here and here. I recommend re-reading these posts, as I struggle to paint a vivid picture of my emotions and I don't think it can be accomplished with this single entry.
Avie, my sweet, precious piece of young life, was sick for weeks. When her wet cough didn't respond to the antibiotics prescribed we were forced to go back to the clinic for a throat culture. I knew what they were looking for. The possible culprit was an unspoken word that neither the doctor nor myself wanted to say, lest the universe hear it and bring the villain straight to Avalyn.
I prayed for days that the culture would be clean. But, when the phone rang with that familiar number, I froze. There is no reason the doctor would call with clean culture results. She said, "Positive for Psuedomonas" and the wave that rolled through me was the same one I experienced when I discovered that I carried the gene for Cystic Fibrosis. The same wave that came crashing when we got Avie's CF diagnosis.
I sat. I listened. I held the painful lump in my throat like a masochist and would not give in to the desire to cry. Looking back, I wish I would have- it was a chance lost. Now, I have to be strong. Now the information is a bitter pill already swallowed. The tears are dried, crusted salt held inside and no longer able to flow. I refused to allow them a path freedom, even after finding out that this bug- this awful infection would require a full year of antibiotics... at minimum. Even still I didn't cry when I realized that they aren't sure this bacteria can really be eradicated.
To top it off, it was the week of Thanksgiving. The start of my favorite season and a short work week for all- including pharmacies. I turned my energy towards action, in the words of the late Maya Angelou, "Nothing will work unless you do". I made dozens of phone calls over the next three days, scraping together the required antibiotics and medical equipment. Something inside was pushing me to get the medication before the holiday, even though the Clinic said it would be fine to start the inhaled antibiotic the following week. The Tobi.
It smokes up her nebulizer like a reverse gas mask. Fumigating her little body and adding another 20 minutes or so to her already long treatment. When the mask comes off, her face is red and creased. But she doesn't care.... she is ready to run, play, move. No longer tethered to the wall, she has freedom for a moment.
A full year of this. One month off of the drug and one month on, repeatedly, for a year. A necessary evil. It's a blessing and a curse. How nice to know this antibiotic is available for us- when just 20 years ago, children died from this dreadful infection without any treatments available. But what an awful thing to need.
So, how will we know if she can come off of it in a year? A throat culture. Another swab stuck down my sweet child's neck, a gagging inquisition made over and over again throughout her life. Every 3 months we will check. Every 3 months we will hold our breath for the results. The results that still aren't 100% accurate. The swab is just a "good representation" of what's actually in the lungs. It could come back clear every 3 months for the next year, but not actually show the ugly bacteria lurking deep within.
Tell me: how do we hope the culture is clear when we aren't sure it's giving us the full picture? Because I don't know what to feel. It seems strange to me to hope for another sign of this microscopic Devil- especially since another positive culture (ever again) will mean that she will have to do inhale Tobi indefinitely. It will mean that the opportunistic little bug has colonized and reproduced and is going to continue its devastation of my baby's airways.
I'm trying to maintain here. Plan Christmas, schedule play dates and enjoy my little munchkin. We took a trip to Disneyland but I couldn't help but think about that magical place often being a child's last wish. This reality we are living seems to sour so much, no matter how hard I try to outsmart it.
Then yesterday I discovered a Facebook post about a precious girl, only 10 years old, losing her life to Cystic Fibrosis. Why? I pray it wasn't from Pseudomonas.
Dear God, please clear this infection from my child's body.
An immediate prayer for a current situation, I realize.
Lord, I pray I have a long future of worries for Avalyn, akin to all the other Mothers' worries for their children; scraped knees, first dance recital fears, broken hearts and wedding day nerves.