The NEW CF chapter

We have been on the countdown for the last week now.  If you have spent your entire life on a small island with 30 miles of paved road then you can understand why leaving on a jet plane is so appealing.  Even though our soon to be trip isn’t one that rooted from a spontaneous dream to live life in the real world, we are trying to take lemons and make some strawberry lemonade, haha

The first mention of this trip happened in January of this year.  The fact that it would require a two week duration is the reason why we are just now acting on the conversation that took place so many months ago.  Since Ya’el still takes 80% of her nourishment from me, made the situation even harder.  Richard was floored when he was informed the trip required so many days of the PTO that we tend to hold on to for emergencies.  The very type of emergencies that warranted a 10 day hospital stay last month.  We rarely get to cash in PTO and rarely is it ever used for FUN, primarily it all belongs to CF…

So, yes our trip is yet another medical trip, but this time Ezzy gets the pleasure of being accompanied by ALL her family image

and not just mean old dad as she says.

 To say she was excited couldn’t even cover what her little heart was wanting to emote.  Ezzy has spent these stressful trips for the last 5.5 years with just one parent typically.  Leaving no one to play with, watch cartoons with and laugh and just have a buddy or two in an environment filled with adults.  

Kyre is actually going to be seen by some specialists as well. Unfortunately being a carrier of the CF gene mutation has a negative impact as well.  After the last year and a bit of chronic ear and sinus infections, Kyre is going to be seen by the ENT at children’s as well as our CF team.  As research and knowledge is gained in the world of CF, it is becoming apparent and slowly accepted that some siblings that carry one CF mutated gene actually have chronic health issues similar to their siblings that carry two mutated CF genes (in case you haven’t figured it out, CF is a recessive disease, which means you have to have two copies of the mutated gene to produce CF). This is a new battle and chapter of CF for us, we are staying calm and not running to the what if game, but instead thankful that we already have a great relationship with Children’s and IF Kyre ends up needing consistent care, atleast we have an idea of how to handle it.

Our weeks are going to be spent going to Children’s hospital almost every other day due to the many appointments that Ezzy and Kyre have.  Ezzy will be having surgery on the 15th.  It is routine for many kids, but for her, it brings about more risks and also has to be monitored by her CF team.  After the results of the sleep study it was evident that surgery has to take place.  Painful is the term they used to describe watching Ezzy try to sleep.
 Apparently it is really bad when you stop breathing multiple times through out the night…The stress and long term damage that can take place on the lungs as well as the brain when sleep apnea is left untreated out weight the risk for our CFer.  We can’t fly for 1-2 weeks after surgery, since Ezzy’s risk of hemorrhaging is so high.  She has to lay low, no running, jumping, exuding unnecessary strain on the body is off limits.  Anytime anything is introduced in a CFers airway, it poses a risk of new bacteria making its home in the warm sticky environment found in Ezzy’s CF lungs.  Extreme caution will be taken and lots of prayer and trust that the awesome God bubble Ezzy has been in is what is holding her parents together.

Ezzy recently told me that she just wants to get this surgery over with. We have talked alot about what they are going to do.  Ezzy is just like her momma, needs plenty of time to process and chances to ask pesky questions and address fears that haunt the unknown.  I wish I could get inside her head and know that I am helping her cope with thisupcoming event. image

 All I know is that I am extremely blessed that somehow everything aligned and we can all embark on this together.  I hope that we can all provide much needed distraction as we wait for surgery and then recover.

While we are down there I am going to run my second 1/2 marathon this summer. I am nervous as all get out.  Frustrated that my PR from my first 1/2 won’t be beat, but am trying to cling to some much needed truth a fellow competitive athlete shared with me as we talked at a church function, thank you friend!  I will be running in the Seattle Rock N Roll 1/2 marathon this saturday.  My ever supportive hubby encouraged me to look into running races every time I leave the rock!  He has put up with months of me training, being tired at night well before him and sometimes throwing a wrench in our already packed Saturdays.  Yet through it all, he has encouraged me, cheered me on, stashed water bottles along my routes and listened to me whine when the hard days got the better of me. I also have had some very sweet little girls that have handled hour long runs being pushed on the track in rain and sun as well as the scenic bike path that resulted in many times having mom yell “lean to the left, lean to the right!”image

I wanted to write a quick blog…haha, are my blogs every quick?  I hope to let you all know what is going on in Ezzy’s next chapter of CF, the unexpected twist with Kyre, so that those of you who faithfully and kindly pray for our family would be armed with the details.  We need God to provide in some ways, its always frustrating when life throws punches, but we are clinging to God’s promise that he sees, knows and cares for our needs.  Since I am trying to maintain a positive attitude, I hope to maybe write a blog on how we survived on a shoe string budget this trip…hello restaurants that have kids’ eat free nights!

The Harneys leave this Thursday, Ezzy has her pre-op appt on Friday, 1/2 marathon Saturday and  then surgery Monday.   Followed by various doctor appts for the girls off and on.  Prayers for protection over the kids and Richard as they navigate through crowded downtown Seattle waiting on me to cross the finish, courage and peace for an anxious 5 yr old, harmony, love and joy as we go to Children’s Hospital when we would rather be doing something else, guidance over the surgeons’ hand, an unbreakable God bubble, wisdom for Kyre’s doctors and most of all speedy healing so we can have some fun as she recovers!  We hope that the 6 of us plus Candy the therapy puppy will survive sharing a hotel room for two weeks and make us an even closer family unit.  

Thank you so much for finding various ways to support team Ezzy, we thank God
for you all!

2 thoughts on “The NEW CF chapter”

  1. Dear Sarah & Richard,
    Whew! I knew a bit of your story, but I just finished your blog about your upcoming medical events….and then your race…girlfriend, don’t you know about chocolate??
    Seriously, I want you to know I emailed your blog to my husband, and three children and their spouses; you’ve got some (more) great prayer warriors intervening for you. I was so humbled reading about the journey God has put you on, because the strength, trust, & love you project can only be from & because of Him. I can’t pretend to imagine even a little bit, even tho I’m a mother & grandmother what you must face daily, but I do know what going to the trenches for your children feels like. We are mmmas, hear us roar!! Thank you for blessing me Saturday….I’ll share with you sometime the story of that day. I am in Or babysitting two of my grandchildren till the end of the month. This morning as I was reading your blog, my daughter had The Fish on and the song ‘Word of God Speak’ came on (as tears were running down my cheeks) I caught the line..’To be still and know that you’re in this place, please let me rest in your holiness.’ I just wanted to share that with you. I’m sure others have encouraged you too. Please know unequivocally that He is & will be with you no matter what, and it’s ok to jump in His lap and rest your heads on His shoulder. I love you and treasure you. Be blessed as you are, such blessings! Liz 🌺

    1. Oh my goodness Liz! Thank you for your encouragement, it has been a rough two days. The hiccups have been hard to handle, but have been blessed that the Holy Spirit has pressed me to talk to God each step. I so appreciate you reaching out and sharing support, I must not have seen your comment until God wanted me too. You blessed me too Saturday!!! See you when you return 🙂

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