CT Scan shows it all...

At our appointment on Wednesday with the pulmonologist, we received the report from Rylee's CT scan on December 13th.  Everyone tried to assure me that no news was good news, but I was still anxious to get the results.  The good news is that after 4 years of recurrent respiratory and lung infections, there were no signs of bronchiestasis, irreversible damage to the lungs.  The bad news, Rylee still had the patch of atelecstasis that landed her in the hospital for 2 days just after Thanksgiving.  There seems to be a bit of pleural effusion, fluid between tissues that line the lungs and chest cavity.  So, we'll continue with Vest Therapy at least 40 minutes a day, more if she can tolerate it.  Hopefully this will break up that patch of atelecstasis quickly.  She'll have a repeat chest x-ray by the end of the weak to confirm whether the atelecstasis has dislodged or not.  Otherwise, sometime in the near future, she'll have to undergo a bronchoscopy to have it suctioned out.
I hate thinking of all these procedures she's had and may have to have, but a part of me has come to the realization that unfortunately this will not be the end of them.  This is her life, this is our life.
I've been corresponding with another mom, she had two young boys who also have PCD.  We are just two women, living thousands of miles apart, but have so much in common.  While we may never meet, it has been extremely therapeutic for me communicating with her.  We discuss daily life-- therapies, treatments, doctor appointments.  But more importantly, we discuss advocating for our children, bring PCD to the forefront of the research community and keeping it there.  We are two women who will stop at nothing to see that our children get the best care and treatment they deserve.  Since PCD is so foreign to everyone, it's so beneficial to both of us to discuss treatments and therapies we find working for our children, with the slight possibility it may work for the others as well.  She too is a mom, running on autopilot, going through the motions of the day, still a little numb from what the last few months have brought us.  I'm hoping, that in some small way, we can benefit from each other, but more importantly that our children can benefit from our conversations.
I'm not sure that anyone reads my blogs, but this has become a great outlet for me.  Expressing all my thoughts and fears, but more importantly, giving a glimpse into Rylee's daily, anything but normal, life.