A year ago today vs. today

A year ago today Carla was officially listed as a status 1a for a heart transplant here in Seattle.  Bobby drove Carla and I up here and we settled in to the Ronald McDonald House.  I can honestly tell you that I thought, without a doubt, that Carla would get her new heart within the month of December and I was hopeful to be home by her 5th Birthday on April 2nd.  

Things certainly did not turn out the way that I expected, but we settled in to life here and eventually just quit waiting for "the call".  Bobby moved up here, Cody moved in with his Grandparents Wright, finished off his Senior year, graduated and eventually ended up in college at MSU Bozeman.  Bobby found a job, Carla started Kindergarten at her special school and we have been enjoying life here and making the best of our situation.  When we got "the call" two Wednesdays ago, I was just of in disbelief...  We made our calls, updated everyone, packed our bags and made our way to the hospital.  Part of me still in disbelief...because you know that until the doctors actually physically see the donor heart with their own eyes, there is always still the chance that it won't happen.

Well, it happened... and now here we sit, day after day as we wait for our daughter to recover.  I can tell you that it is no surprise that this recovery hasn't been easy peezy.  Carla has never recovered easily.  So, we do what we do.  We and her Grandparents sit with her 24 hours a day and  we make sure that she knows she is loved, and the doctors and nurses know we are involved. We pray and we wait.  We update our loved ones and those who love Carla, and we ask for more prayers.  We relish in every improvement and we ache with every setback. We pray.   We hang tough and we try to remain strong.  We pray.  Sometimes we cry, sometimes we laugh, sometimes we are angry...but we are always full of faith that this will be over soon and we will be loving on and playing with our sweet Carla soon.

Today Carla is resting pretty calmly.  She had some moments last night where she awoke, freaked out and had to be held down and sedated as she fought with all of her might to extubate herself!  Luckily, she did not succeed.  She has had a bit of a fever today and they have started an antibiotic as well as taken pee, blood and lung secretion cultures.  They turned off her diuretic, because she had peed plenty, changed her from morphine to a different pain killer, started her on a sedative drip, started doing vibrating chest treatments again and now they also have a plan for tomorrow.  If her lungs continue to bleed they want to do a flexible bronchoscopy, to see which side the blood is coming from and then do a heart cath to coil off any collateral veins.  A collateral vein is a vein that formed itself and leads to nothing and is pretty much worthless... single ventricle children get collateral veins all the time and if she has one that is the culprit, coiling it off would stop the bleeding.  So, that may happen tomorrow.  It is my hope that her lungs will just heal up and that we won't need to do anything else so invasive.

Please pray that Carla's lungs will heal up, that she can be extubated successfully and that we will be able to move on from this phase!

Love, Jen


cici said...

Hi Jen,

I saw this and thought of you...

"If you're discouraged, turn it around by remembering God teaches you patience during delay."

If you're discouraged because of God's delay in answering your prayers, understand the delay is NOT a denial. Just because the answer or the miracle hasn't come - yet - that doesn't mean God isn't going to answer or that he's forgotten you or that he doesn't care about you. It simply means "not yet!"

Part of becoming spiritually mature is learning the difference between "no" and "not yet," between a denial and a delay. The Bible tells us, "He who is coming will come and will not delay" (Hebrews 10:37 NIV).

God's delay may be a test of your patience. Anybody can be patient once. And, most people can be patient twice. And, a lot of us can be patient three times. So God tests our patience over and over and over.

Why? So he can see how patient you are? No!

He does it so you can see how patient you are. So you'll know what's inside you, and you'll be able to know your level of commitment. God tests you so that you can know he is faithful, even if the answers you seek are delayed.

If you're discouraged, turn it around by remembering God teaches you patience during delay. Ask him to transform your discouragement into patience.

You may be going through difficult times right now. You're discouraged because the situation you face seems unmanageable, unreasonable, or unfair.

It may seem unbearable and inside you're basically saying, "God, I can't take it anymore. I just can't take it anymore!"

But you can.

You can be patient a little longer because God is with you. He'll enable you to press on.

He is watching over Carla and his timing is Perfect!


Angee and Thom said...

This little Sweet Heart likes to do things in her own way. I hope today is a better day. I think and pray for all of you often.