Friday, June 20, 2014


We dropped the kids off with our friend Amanda VERY early (thank you...I know I promised I wouldn't say thank you again, but I can't help it.  I'm SO thankful for friends!)
We arrived a little early, so we went and sat in the garden at CHOA.  
This is the same garden we paced with friends and family as we wondered how Elena would ever recover from her surgeries 10 years ago!
 It was so nice to enjoy some time alone with our giant daughter.

We checked her in to the day surgery where she was prepped and then we waited and waited.  We played games and waited.  We were visited by our friend and CHOA nurse, Rosie, who kindly brought us coffee! Then we waited.
Then something neat-o happened!  A nurse came in to do more paperwork and check in stuff when I said, "Is your name Brenda?"  It was!  This is a picture of Brenda with Elena 10 years ago!  
 Picture of Brenda with Elena now.  So neat!  Brenda helped us a ton with Elena's ostomy bag issues when she was an infant.  She even came to our home!
It was closer to time for the bronchoscopy!  We learned about all that would be done before she was taken back.  The scope would be inserted down her throat into her lungs where they would take a series of pictures.  Then the would "clean" out her lungs by inserting saline in and then sucking it back out to gather a sample from both lungs for attempting to grow cultures. Finally, they would do her breathing treatments for her by inserting the meds directly into her lungs.

The longest process is the putting to sleep and waiting for that to wear off.

 It was time!
 She did so well!  She was gone for about 2 hours.  Her recovery took longer because she needed a little extra oxygen.  Once she was awake and felt like talking, she wanted to see the pictures.  Daddy showed her all the pictures of her lungs.
 Then he was Dr. Daddy which got her to smile a bit!
 We arrived at 7:30 and we were out by 2:30.  Elena had not eaten since the night before so we headed for a Mexican feast!
 Then we went to pick up the other E's from Amanda where we were greeted by Becky and her kiddos.  Elena wanted to visit shortly.  Nothing helps with recovery better than time with friends for Elena AND Mommy and Daddy!
Elena wanted to read the last chapter of the last Harry Potter book on the way home from the hospital.  She finished it all!  So....
 Naturally we spent our relaxing afternoon watching the first of the 2 part finale of Harry Potter and Deathly Hallows!

We should learn about the results of her scope next week.  Elena will follow up with her awesome doctor the week after that.  Until then, she will be started on a round antibiotics.

Tuesday, June 17, 2014

Up next: bronchoscopy

We will have the bronchoscopy Friday and then follow up with McKean on July 1st.

Meanwhile, we are testing for a new belt color in karate, enjoying snow cones,

music practice
 family cleaning
 building lego creations (this one is called Harry Potter and the 7 other dudes)
 getting haircuts (Thanks Jessica!)

and playing in the rain

 The dentist is on the to do list this week, too!  How do you make a dentist visit fun?  Maybe a dental scavenger hunt! Hmm, I'm off to figure that out.  Surely some other mom has figured this out already and I will find it on pinterest. :)

We like to keep things busy around here.  It helps to keep our minds off the crazy medical stuff that could consume us if we let it.  Sometimes it does (and it has this past week), but thank goodness for 4 sweet little faces that keep us laughing in this house!

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.

Want to see what my family is up to?