Wednesday, June 11, 2014

Lung Function Mystery

Last week we learned that Elena's function had no change.  This was good because it had not dropped, but bad b/c we were not any closer to finding out why her function is down from normal in the first place.

Her cultures grew nothing.  That was great news, but still had us scratching our heads.

Our plan was to get a chest x-ray.  We did. Another great experience at CHOA.  Kids gave the staff lots of thumbs up! Plus, as a bonus we saw a friend working that is a nurse there!  Thanks Rosie for the sweet encouraging words!
What we learned from the x-ray?  Nothing.  Her x-ray was clear.  Again, this is good news, but still no answers to the lung function mystery.

Elena also had a skin allergy test.

What we learned from the allergy test?  She is allergic to dust mites. If you read more detail about these little devils you will never sleep right again...they are everywhere and mostly in your pillow because they live off your dead skin. Yum!  Now YOU can sleep pleasantly tonight, too.  She is also allergic to soy. You know, soy, the stuff that is in everything she likes to eat. Super!

Dr. McKean felt that her drop in lung function over the last few months was related to allergy issues. Thank you Southern plants and climate.  However, there is one more test he would like to try. Especially after our visit tonight that showed her lung function dropped another 5%.  SHOOT! Yes, it did drop again.  Shootastic.

Next step:
Bronchoscopy:  She will be put to sleep. They will send a tiny camera down her nose and into her lungs to take a look around.  It will also put a little salt water in her lungs and then suck it back out and see what she has growing in there that refuses to grow a culture from her sputum tests.
Elena appeared calm and as cool as a cucumber as she sat and read her Harry Potter book However, she just told me she wasn't calm at all.  CF makes Elena have to take on so much at such a young age. We ask so much of her and she really does such an amazing job handling it all. She is so very mature.

We will go back to McKean one week after the test (which we book tomorrow for sometime next week) and decide a next step. Hospital is still a potential, but we will cross that bridge when we come to it.

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