Home is where my comfortable bed is

That's right, I'm HOME!!! After 3 weeks exactly, I was finally released from the hospital and arrived home Monday afternoon :). It is such a surreal feeling to all of a sudden be done with the 

'hospital life'. Nobody is telling me what time to eat, or walking in my room in the middle of a nap, taking me order for dinner, taking my blood at odd hours of the night or asking me to get on a scale while I've visiting with friends! It's like I no longer am focused solely on my body but I have the freedom now to decide what to focus on, it's kinda overwhelming yet wonderful!

Monday, I arrived home and ate some lovely homemade tacos made by my sister, took a long shower (in my own shower!!) and ended up napping for a good 2+ hours...it felt great! I slept in my quiet room with the birds chirping outside (not machines beeping in the hallway)!!

Thank you, Lord, that I am home. I am overly thankful for the incredible care I received in the hospital, for my doctor who genuinely cares about me, and for the many people who sacrificed their time, gas money, and energy to come keep me company and bless me with their encouraging hugs and smiles. As that long 3 weeks comes to a close and I begin to regain my stamina and adjust back to life, I am just very thankful :)

~Em

~Em

Loving My Mom

Happy Mother's Day, Mom! My mom is pretty great, if you've had a chance to meet her, I KNOW you would see the amazing qualities that make her a woman I am so thankful for in my life. Here are some of the great things that make up my mother (this list could go on and on, but here is just a small sample):

-She is always sacrificing herself for the needs of her family

-Throughout my life she has always worked so hard to provide for us

-She has an amazing heart full of love for each person she meets

-She is one of the smartest women I've ever known.

-She is a prayer warrior, always praying for the people she loves. Her faith is glorifying to God.

-She makes me laugh when I'm grumpy :)

-She cooks yummy meals, Bon Apetit' style!

-My mom is a wonderful hospital companion- she gives up so much time and energy to decorate my room, bring me clean clothes, and keep me company through scrabble games and  great conversation.

-She is always supporting everything I do, she is my #1 cheerleader in life.

-She has an amazing ability to stay positive and encourage- she always sees the silver lining no matter what is happening.

Thanks, Mom, for being you, I love you :)

~Em

Almost 3 weeks!

That's right, this is the longest I've been in the hospital since my senior year in high school...geez. Here's a little update on how things have been going. First off, I've been blessed with great care. as much as I don't enjoy staying, I am thankful for the care and love I've received from my CF Team and nurses here on the floor. Thanks, USC!

It looks like I should be going home on Monday, which will make it a total of 21 days here...wow! I can't believe I've been here so long, i guess I've sort-of gotten used to the routine and just the way things run. However, going home to eat home-cooked food and sleeping in my own bed will feel glorious. I've had to stay a few extra days because unfortunately, my insurance company would not authorize me to go home on 4 IV antibiotics. Even though I've been doing home IVs since I was young, doing 4, plus me having a previous allergy in my course of meds here posed to be a liability and they'd have to send a nurse. Sending a nurse plus liability for the insurance meant that if I needed to continue IV treatment it would have to be here at the hospital...so here I remian.

I had hopes of going home last week but had to take the blow and stay here a few more days to allow my meds to kick in and finish out this course of treatment. The good thing is, when I get home, I'll be officially done and glad to have a break from all this- no home IV treatments to continue :). As I endure the last few days, I ask for your prayers for my patience, for stength to keep going and keep fighting, and prayers for my lungs (and lung function) to bounce back up to baseline allowing me to breathe well and get back to my active life! 

Thanks, friends, for continuing to be with me in this journey, for continuing to support me as this has been a LONG 3 weeks, and for your encouragement and love- it has come at exactly the right times :)

~Em 

Team Emily is AMAZING!!

On Saturday, dear friends and family gathered at Dana Point Harbor to walk in support of me and the many around the US with Cystic Fibrosis. Team Emily ROCKED!! We had over 40 people come out for my team alone, wear our sweet green shirts (thanks Mike, everyone still loves them!), and raise awareness and funds for research. I don't have the final total yet, but we approximately raised close to $9,000 and considering our economy that's amazing! I'll post the final numbers when I get them :).

Thank you, dear team- far and near. Thank you to those who donated to our team, and to those who participated. I felt an incredible sense of love and blessing as I wasn't able to attend. Sitting in the hospital, knowing that the people I love were cheering me on, giving up their time and energy to walk in my honor was the best gift of encouragement I could have received. I was blessed beyond words, and from the looks of the pictures and stories I heard, sounds like everyone had a blast! Here are some pics from the day...look at that awesome team :)

Love you, Team Emily!

~Em

Psalm 40:1-3

  I waited patiently for the LORD; 
       he turned to me and heard my cry.

 He lifted me out of the slimy pit, 
       out of the mud and mire; 
       he set my feet on a rock 
       and gave me a firm place to stand.

 He put a new song in my mouth, 
       a hymn of praise to our God. 
       Many will see and fear 
       and put their trust in the LORD.

Team Emily!!

Saturday, May 2nd...Dana Point, CA...9am...

Team Emily will be walking to support Cystic Fibrosis!!

Please consider making a donation to support CF research and ultimately a cure- I am honored and blessed by the many who rally behind me and the 30,000 Americans with CF. It is truly a huge gift I could never repay.

~Em

Random Musings from USC...

I've grown accustomed to (the good, the bad and the ugly of life here at USC)...

-The sound of helicopters landing on the roof in the middle of the night, and praying for the patients who are receiving organ donations!

-Distinguishing my doctor's voice and laugh through a closed door while he puts on an isolation gown

-Sleeping through beeping, the testing of fire alarms and people taking the trash out at 3am

-Eating my food on a tray

-Directing the blood 'vampires' as I call them as to which vein they should poke next :)

-The blessings of friends and family taking time out of their day to email, text, or stop by to visit.

-Wearing sweat pants and a sports bra...holler!

-Incredible nurses coming in with a smile to cheer me up

-Answering the question "did you go to the bathroom" and giving details each day, haha

-Playing the 'order my food' game which consists of: giving my order for breakfast, lunch and dinner by choosing whatever sounds good AND whatever looks good here...tricky!

-Peeing many times in the middle of the night because I've got bags of IV meds dripping in me!

-The days going SO fast and then wondering what the heck I did (thanks, God for giving me patience)

-The lovely view of the park and homes up on the hills of LA

-The purring sound of my IV pump as I sleep which thankfully drones out the busy-ness in the hallway outside

Just a few  little observations I've made during my stay here to let you guys into my 'world'...!

Happy Friday!

~Em

9 days in...

It's been a long 9 days, but to be honest- it's been completely God's strength and not mine. I can't believe the week has flown by and I'm still standing on two feet :)...Here's a little update.

After coming in last Monday I spent a whole week on the CF floor at USC. I was put on 3 antibiotics to help clear this infection out and one of them I had an allergy to (Imipenum). By Sunday night my allergy was heightened so much that my heart was in pain, my throat was swelling and I couldn't stop coughing as the itching and burning spread throughout my body. It was such a painful and frustrating experience that my doctor discontinued the med, and Monday had me put in the ICU yet again to try a new one (Cefepiem). I spent 24 hours in the ICU and was thankfully moved back here to the 6th floor where it is a much happier, quieter, friendlier place. Thanks be to God who seriously got me through that time!

Now, I am taking 5 different IV meds to treat not only the bacterial infection but also a fungal infection that has grown inside my lungs.  So, I am thankful to have meds that I am not reacting to and also meds that will be targeting the specific bugs in my lungs. It's been 9 days so far and I don't know when I get to go home, but I sure hope it's soon.

 I am willing to hang in there and really kick this infection, so I pray I can keep going and these meds kick in. That's all for now...time to get some much anticipated sleep.

~Em

Fuel TV

A week or so ago I posted about Fuel TV doing an interview of me for Pipeline to a Cure... Well, it aired today and will air again tomorrow on Fuel TV, 11:30 and 2:30 (california time). I'm still working on seeing if I can get an online clip, so far no luck, but if I do I'll post it. If not, and you get fuel tv, check it out tomorrow (tuesday, april 28th)! I, myself, will be watching it when I get out of the hospital- my fabulous parents taped it for me :)

~Em

My God is With Me

As i've been in the hospital, I've been reminded of God's faithfulness through some songs that we've sung in church lately. This song, by Matt Redman has been at the forefront of my mind, really bringing me comfort. God does not let us go no matter what we go through :)

~Em

Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I'm caught in the middle of the storms of this life
I won't turn back
I know you are near

And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?

Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me

And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We'll live to know You here on the earth

Yes, I can see a light that is coming for the heart that holds on
And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You