Thursday, August 22, 2013

back burner

One week ago, I went into CHOP feeling pretty confident that it was just a normal day there.  Stopped by research to have them document her stats and take blood, as she is taking a pill they are researching.  Then on to our check up as usual for my Bailey Caelyn.

We were due to get an X-ray done so we did that first.  Then Bailey did her PFT's as is customary before seeing the doctor.  About a year ago, her number was 103 and we celebrated, as she usually pulled around 100.  Around 100 was considered her baseline - a healthy child could breathe 100 or 130.  This is a lung function test basically measuring lung health.  Bailey's best was a 92 out of 5 tries, even breathing one 87.

My heart sank - I actually had been assuming it went up with all of the ocean hits we took this summer, as the salt water is basically like a kind of lung/mucus therapy.  She dives in with her first wave and comes up with snot pouring out of her nose.

But it went down, as it has gradually over this past year.

Fast forward through a long visit with our doctor, nurse, social worker, nutritionist and physical therapist and I was ONE BAT SHIT CRAZY MOMMY.  I tried not to lose it in front of my sweet B but I did.  I couldn't stop the tears.  We came up with a game plan and I was up most of the night googling things and crying.  Same the next night, with the addition of a phone call under my belt with a top CF doctor, the one in charge of her drug study, who recommended we hospitalize her.  I said no, for several reasons, which our regular doctor and nurse agreed with.  We return on Sept 16 and if her number has not come back up at least some - she has been put on an antiobiotic for 2 weeks, adding a new CF drug and switching from manual PT to the Vest - I have the feeling they'll want to admit her.  Or I know they will.

I am trying not to go into too much detail because if you are on FB with me you already know alot of this, and if I know you at all you will get a CFF fundraising letter from me soon, as our walk is in early October.  So you will be inundated with info about CF and Bailey.

But I wanted to write today to tell all you girls who read my blog (there are a few of you, yes?  and maybe a few boys!) to CHILL OUT.  Do I sound like I'm yelling?  Sorry.  I just really mean it.  We all have these times of "oh my gosh THIS could have happened to me" - be it something like a near-miss car accident, for instance.  These moments of realizing what's really important and what does not matter at all.  Or at least not very much.

Following this CHOP visit and having to stare Bailey's CF square in the face, I had this type of moment.  Everything but her health and happiness, and Taylor's, is on the back burner for me.  I just don't care.  I still have to live everyday life, and work, and all of that - but I don't really care.  Does that sound bad?  Sorry again.  I just really mean it.  Again.

Right now my girls are cracking up wrestling and talking about how their heiney cracks are in each other's faces.  They're threatening farts.  Usually that is when I pipe up with "girls, be appropriate, that is gross."  But remember, I don't care.  I am just happy they are here, in my home safe, and playing.  I am sure I will be back to caring, sooner rather than later, but for now I am simply not worrying about anything that isn't important.  And most of it's not.

Thank you everyone who has been texting, messaging, calling, commenting on fb and most especially, PRAYING for my sweet girl.  It hasn't gone unnoticed, I have noticed very much.  I am so appreciative.  I can't wait to update you with a report that Bailey's number has GONE UP.

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