Bronchoscopy

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.

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!

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.

No News, but in the News!

Elena will have a follow up with Dr. McKean in a week.  We will then decide the next game plan.  If she has no change, decrease of, or only slight increase of lung function then we will be going to the hospital for a bit.  If she has a big jump in lung function, we will continue the current medicinal arsenal schedule to maintain and improve.
Until the next appointment, we are staying busy and doing summer fun stuff like playing in the pool, the sprinkler, the pool, the pool.

However, Elena took some time away from water and enjoyed a visit to Channel 2 Action News Weather to shadow David Chandley!  PaPa and Nana bid on a tour at the Wine and Roses auction and won it!  Elena enjoyed learning the in and outs of what it means to be a meteorologist.  She came home wanting to add that to her list of things to try for.

She practiced delivering the weather "teaser" commercial in less than 4 seconds. Nailed it!

 She sat behind the desk and read from the teleprompter. Nailed it again!

 She visited the make-up room. Loved it!

 She watched David work his magic with the green screen. Totally wanted to do this...see the look of nearly jumping out there with him?

 She learned how to read the weather maps and zoom in on areas of the map.

 I think she would have delivered the news live if they let her. No, I don't think...I know!

Thanks Nana, PaPa, and Mr. Chandley for this extra special and educational day!

Great Strides and a Health Update

Elena has been experiencing a slow declining lung function over the last two months. 20% down. We tried antibiotics after we had a cold virus.  Her lung function was checked and went down further after that treatment.  By that time, she was having complications due to the pollen before she could fully recover from the cold. So, she was put on steroids for the crazy inflammation in her sinuses. Again, her lung function was checked and had gone down further after that treatment.  By that time, she caught another cold.  Poor kiddo can't catch a break for her lungs to heal.  She has always bounced back after stuff, but this time we can't get her well enough so she CAN recover.

It seemed that a hospital stay was imminent as we walked into the CF office two weeks ago. However, we were given 2 1/2 weeks to make another attempt at getting the lung function readings to increase.  Dr. McKean discovered that there is a pattern over the past several years where her lung function drops during the pollen season and levels back out at a much higher range by early June.  This pattern was a quite a relief.  She CAN recover because she has.  Of course, with Cystic Fibrosis there are no guarantees, but this was still very hopeful. 

We tried a new routine at home with some different medicines.  We did 3 breathing treatments a day plus taking a med that has worked for her the last two years when this happened: Ceftin. Also, we added some essential oils to a diffuser.  I talked to McKean about this hippy idea and he loved it (seeing as how he was a hippy himself) and has actually been researching it a little more himself.

After 2 weeks, Elena went in for another lung function test.  Joel and I were out of town and my parents took her in for the test. We were happy to hear that her lung function had gone up almost 10%.  However, McKean wants us to continue the 3 a day treatments and essential oil diffusing.  In the mean time, we awaited results from a throat culture that may hopefully explain why we can't get the function all the way back up, but the 10% increase is something to celebrate for sure!

The culture results are in and there is nothing growing from the "CF naughty list".  That is great news.  However, there is still the unknown.  Why is Elena's function still down?

McKean and I seem to agree that this was a Georgia Pollen season thing. He is giving us another 2 weeks to get this lung function back up to her normal which is another 10%.  We will continue the 3x daily treatments, plus her usual groupings of meds through out the day.  We are adding Singulair to the list of meds to be a new regular med.  At the end of two weeks, we will then do another lung function test.  No change in lung function, decreased lung function, or a slight increase of 1-3 percentage points will mean that Elena will go in for a 2 week hospital stay.  A bigger increase means we buy more time to continue our fight on CF at home.

What's the big deal?  It's just a few percentage points of lung function.  I know, I think the same thought sometimes.  However, it is the decreased lung function or the dip in body weight that can cause the common cold to end the life of one with CF all too soon.  I know because I have seen it happen one too many times this year. Fighting for the health of our daughter with CF, fighting to maintain the good health of our other 3 kiddos AND ourselves, fighting to find the "rainbow" in all the down pour, fighting to end Cystic Fibrosis: THAT is what we do!

Our fight to end CF was well celebrated with our Rosebud CF Superheroes at Great Strides! They discovered all the Great Strides teams combined from around Atlanta raised over $1,660,000 for the Cystic Fibrosis Foundation.
WOW!  This is an amazing number and it really rocks my socks off! 

Here are a few pictures from the walk.

 The day started out with traffic, but perfect weather!

 Rain was moving in, so we ate a quick BBQ picnic.

 Mommy with her bud Colin!

 Then we headed over the Lowe's workshop and made a bunch of fun goodies!

 They were a little too good with hammers!

Great Strides is always such a great day!  I love seeing the SEA of CF Supporters in these walks each year!

2 weeks from now I hope to be making an update that includes a lot of increased lung function!!!

A side note, it is CF Awareness month.  This blog post here: http://www.rantlifestyle.com/2014/05/13/how-to-be-friends-with-a-sick-person/#r1SmWFD0pyq44X0W.01

Worth the read.  It gives a lot of great tips for being friends with someone with CF (or friends with their parents for that matter). 

Summit Family Night

We created a little video to show the kids accomplishments on Family Night. It's not really a CF update, but you DO get to hear how well Elena's lungs are working as she shouts out her lines!
Enjoy!

 http://youtu.be/FaCwbed_Vhg

What a weekend!

This was a great weekend to raise money for Cystic Fibrosis!  Of course, every weekend is great for that.  However, this one was filled with two wonderful events!  First was Elena's team Rosebuds.

Elena started the Rosebuds five years ago.  We have met so many wonderful people and grown even closer to our already close friends!  We have adopted the CF Superhero theme for our little Rosebuds and this year we introduced capes!  It was such fun!

Our Super E's had their shoes all lined up and ready for the big event!

The kids ran 25 miles at their own pace in the months leading up to the big event.  Then on race day, they ran the final 1.2 to complete a marathon!  All the while, raising money for CF.  Pretty amazingly super for sure!

The Super E's were caped and ready!  Elena had her special 65ROSES baton from her friend Kevin McCarron!

Emily wanted to hang out with her dear friend Sue.  So she chose to exchange giggles and smiles with Sue over running.  Smart girl!

Everett took Emily's place.  He had been trying to run since he first woke up so he was happy to run for real with his Daddy!

Ethan wanted to run fast with his Mommy...that is, until he saw his friend Samuel!  Then he took off and I was left chasing after them trying to catch some photos.

 Elena led the race with the other Mascots.  She was so excited to get this honor!

 Here are some of our Superhero Super friends!

The kids finished their final lap by entering the Gwinnett Braves stadium and running around the field!  How cool is that?  Family and friends were cheering them on in the stands.

Just a sample of some of our Official marathoners!

 

 Elena and her fellow CF Superhero Brianna sold earrings they have been making.

 Elena's doctor and our excellent friend was able to make it for the race!

 The end result of the morning was lots of clinking of medals, much giggles, and loads of smiles!

At the end of the day, our CF Superhero Rosebuds had become marathoners AND raised their goal of $6500!  I hope they are proud! They should be.  I know Elena is!

Next event up: the Cystic Fibrosis Foundation's Wine and Roses Gala! It was a New York theme and it was amazing! I thought my parents couldn't top last years event and I think they took that as a challenge!

My parents and their committee members worked tirelessly for the past year to plan the fabuous event.  Their hard work really paid off!  The event made more than it ever has!  It topped their highest numbers which were reached last year (my parents were also chairs then).  They have raised over $320,000 in this event!  WHOA! Start Spreading THIS news!

Joel and I were greeters for the first part of the event.  I LOVE doing this.  You meet so many wonderful people and get to be the first to hug the necks of old friends!

 My gals and our dapper men!  So nice to have spent the evening surrounded by loads of support.  I'm sorry the Denton's had to leave after my godson fell at the playground and broke his elbow!  Poor kiddo.

My nephew is growing so fast!  He is taller than me and his feet are bigger than his Uncle Joel!  He shows so much support and loads of patience and maturity as he sits through these events each year.  Plus, he tolerates his crazy Aunt quite well.  That takes a lot of effort.  :)

My cousins Lindsey and Brandon were able to make the event along with my Aunt Beth and Uncle Gary!  Several family members were unable to attend because of health complications and rapidly filling up schedules, but we knew they were thinking of us!  We have such an amazing support system within our family, friends, and CF community.

Joel and I had a moment as we thought about Elena's Guardian Angels.  What a different story CF tells now than it did 10 years ago when Elena was born.  The "Bid for a Cure" speech was done by the parents of Sutton Grace.  Sutton was my inspiration at Mile 2 at the 65ROSES Half marathon I did last month.  Sutton's Daddy spoke of her first year of life.  Every word he spoke has been said or felt by us.  We (and our family and friends that surrounded us) re-lived that experience with every word Sutton's Daddy shared.  Pretty sure there were very few dry eyes...very few if any.

The dance floor opened up and I enjoyed goofing off with my dad and fabulous Co-chair of the event...

 then moved onto being crazy with my crazy friends who get me faults and all and yet still love me...

 even when I act like this on the dance floor...they still love me.

yup, they still love me!   

My nephew can see where I get some of this silly crazy behavior...hmmm, could be my MOM!

Dr. McKean was all ready for a party!  He was dancing most of the night!  He loves his rock and roll.

Joel took the opportunity to shake it with his MIL.  My mom is always a good sport and up for fun.

I even got the opportunity to dance with my friend Colin!  His parents are also on the committee and Colin has CF.  He's happy and pleased to be Elena's Cy-bro.

 Nothing says New York more than a kick-line!

 My parents were beaming.  They knew the success before the dollar count was even tabulated.  So proud of them and their extremely hard work they have put forth for this event.  Not sure my kids know how lucky they are to have such fabulous and FUN grandparents!

 Meanwhile, back at home, the kids were being watched by our neighbors and friends Andrew and Emma.  To give you an idea of how it went...when the kids woke up in the morning, they were VERY disappointed that it was just their boring parents and no Andrew and Emma to be found.

I apologize in advance for the love fest, but these CF events bring out the mush in me...
To my husband, my kids, my parents, my extended family, my friends, and my CF community; I can not thank you enough for the amazing support you provide to my family, the Goodrow Gang. We are forever grateful for all the kind words, prayers, well wishes, hugs, shared tears, CF event participation, and the loads of time you dedicate to us.  We love you all!