Today was a special day.  The last thing on Meaghan's "To Do" list for summer was to camp in a cave.  That was a tall order so she compromised and agreed that visiting the cave would be fine.  With no school today Jason used some of his time to fulfill one more wish for Meaghan.  We drove to Luray for the day.  It was everything Meaghan had hoped for and more.  Everyone really enjoyed themselves.  Meaghan learned a lot about the formations and how they got their names.  Seeing them through her eyes gave me a new appreciation for the cave.  As far as the trip goes, I couldn't have asked for anything more.  

On the other hand, we didn't get the news we were hoping for from the CF clinic today.  The pseudomonas infection is still there.  The nurse called my cell during the car ride down to VA.  The plan is to restart the inhaled antibiotic, Tobi, start one more oral antibiotic, schedule a bronchoscopy for 6 weeks from now and consider placing another PICC line for IV antibiotics.  Meaghan's situation is a difficult one.  She is still on three oral antibiotics that she started in February for the MAI or non-tuberculosis mycobacteria infection that caused the pneumonia that put her in the hospital twice.  During Meaghan's last clinic visit the fellow who examined her told me that testing positive for pseudomonas after the MAI isn't hard to believe.  Lots of CFers have the same kind of problem.  Unfortunately, pseudomonas is common in CF patients and almost all of the time, they aren't able to clear it.  So Jason and I told our nurse to please tell the doctor that we want to be aggressive with this bug.  Don't get me wrong, we HATE that this is happening but we want to hit this bug and hit it hard.  So if all of this happens the way we think it will, Meaghan will have a bronc by November 1st and be done with IV's before Thanksgiving.  We'll just have to keep watching and waiting for whatever comes next.  One breath at a time, minutes, hours and days all take too long when you live with CF.

OK.  There are so many things on my mind.  I want to scream, cry and hit something.  CF SUCKS.  When you look at my beautiful girl there is no way she's sick.  But what's really going on you can't see.  She was born with this terrible disease that causes her body to produce thick sticky mucus that traps even more terrible "bugs" in her lungs.  There are medicines she takes to help open her airways and try to thin some of the mucus.  We hook her up to a big, loud machine to SHAKE it all out of her, we hope. We agreed to put a feeding tube in her belly because she was failing to thrive.  I completely believe that if it were not for the tube, Meaghan would be in a much worse state than she's in right now.  We force enough calories into her body while she sleeps to keep her growth on an even upward curve.  BUT, since her hospitalization last February we have been unable to give her the regular, full concentration in her feeds.  The seemingly countless antibiotics she takes to treat her infections make eating nearly impossible.  Again, at least we have the tube.

I can try to stay positive but my mind is wandering down a long, dark path.  I don't know where I am, is this the beginning of something so much worse?  Is this the end of all our good times?  With all this going on, how do other families do it?  I read that Meaghan's MAI infection is its own kind of lung disease.  That's so wrong.

I'm rambling now.  There is a plan, something to hold on to.  Loosely, things change very suddenly in our CF life.