So she's cultured psuedomonas

Okay I'm going to try to compose this in a readable manner. That said, I'm a little shell shocked right now. I mean I KNEW we had beaten this psuedomonas infection. I mean her pfts were the highest they've ever been. I mean EVER been at her appt last week. I know in my head that doesn't automatically equal a negative culture, but my heart was pretty convinced.

So I'm going to try to explain this bacteria. It grows in stagnant water. So leave a bowl of water out for a day, and you have psuedomonas. Not a prob for healthy peeps.

But it does so enjoy the stickiness of cf lungs with all their mucus. In this case, my daughter's lungs...
So she cultured it once when she was two. It caused some scarring in her lungs before we detected it. We were able to stop culturing it with a round of inhaled and oral antibiotics. Important side note: trying to do swabs to detect lung infections are tricky. Being negative for a bacteria does not absolutely mean the patient doesn't have the bacteria. It simply means that the particular chunk of mucus did not have the bacteria. But she had not cultured it for nearly six years so pretty sure it was dead.

So she cultured it again a couple of months ago. Once again we did inhaled and oral antibiotics. And now she's cultured it a third time. So we will once again go after it with inhaled and oral antibiotics. But the more often she cultures, the more likely it will become colonized, aka permanently set up shop in her lungs. And right now the doc believes this will be our last attempt to completely wipe it out. If she cultures again, we just try to keep it from overrunning her lungs and causing scarring.

So what does that mean for Grace's future? Seriously, I'd like an answer to that.

The truth is we don't really know. Many, many cf patients are permanently positive for psuedomonas. Is it a good thing? Abso-friggin' positively not!
Could she have cultured worse things? Crazy, scary bite your nails yes...so much worse.

So lemme try to explain this.
Today I feel like CF is this big monster, and it's got my child by the arm. This monster is straining to pull her away and off the edge of a cliff. And I'm holding onto her other arm. I'm pulling as hard as I can. I'm throwing bottles and bottles of pills at this thing, loads of nebs, a pink Vest and every specialist I see. And most days I can keep my baby from moving. Most people don't notice that she's moved at all. But it's happening. By tiny baby steps and against all the force I can muster, CF is gaining ground.
And as wonderful as she her lung function is and as much as she's growing, I still know that the cliff is off in the horizon. And it scares me more than I could possibly put into words.

Today I know we lost some ground. So I'm going to cry. I'm going to be sad, and I'm going to be angry. I'm going to pray in between the sobs, and then tomorrow we're going to keep fighting. And I'm going to keep pulling.