Tuesday, July 1, 2014


Elena had her follow up with Dr. McKean today and this is what we learned:

-She has edema in her lower left lung.

-Her lung function is still down and Dr. McKean has decided to call it.  She has a new normal which is unfortunately low.  That is not news a CFer wants to hear.  That was the only bad news we got today!

-Fungal and bacteria free according to the bronchoscopy results!!! NO Pseudomonas!!

-We have one outstanding test we are awaiting results for that we should have before the end of July.  It is a TB like test.

-She is NOT allergic to peanuts, Brazil nuts, coconuts, or pecans. However she IS allergic to almonds, cashews, sesame seeds, pistachios, and hazelnuts.  We have added that to the list with soy and dust mites allergies.
-The upside...she can eat all the boiled peanuts and candied pecans she desires!

We will continue 3 a day treatments in hopes that we can get an improved lung function at her appointment in 6 weeks back at this office and prove this low "new normal" WRONG!

To celebrate, we went to IKEA...wait, what?  Yes, I took 4 kids into IKEA. It sounds like punishment but it was fun because it was a giant building full of rooms to play house in!  We were on a mission to find a cart for Elena's vest and nebulizer.  We found it!  We brought it home and Elena put it together herself.  Now she can move from room to room with ease to do her treatment where ever she pleases.  This is a very big deal!  This machine is HEAVY!  Two thumbs up for making CF living a little more fun and all with a little rolling cart.

We will be back to our awesome CF dr office in 6 weeks to show CF who's boss.


  1. New nickname: Ingenius Julie! You ROCK

  2. Love the cart! Great idea! And who doesn't LOVE a visit to Ikea?


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