Tuesday, August 7, 2018

Landrey's Journey Part 11 (Fifth Birthday)

This was originally posted September 7, 2017

"Mrs. Eargle, do you know what the signs of cardiac arrest are?"

"Um I think so." The day was flying by. I had waited 73 days to take Landrey home and now I just wanted one more day in the hospital so I didn't have to carry the load. I looked down at my watch. Four hours in. It would end up being an eight hour crash course on medical protocols on my own child. 

"Okay let's practice," the charge cardiac nurse handed me a long feeding tube. I looked around for a doll we had used for CPR training. "No, you have to know how to insert an ng-tube on your own child." "What?! No! I can't, on her?" I responded.

The nurse pulls out a long tube from Landrey's stomach out through her nose. "You're going to insert this in her nostril, you will feel resistance going down the back of her throat. You have to be a little bit forceful, but not too much." She puts her hand on mine and says, "Go, go, go." My eyes start fill with tears and I say "Noooo, not on her!!" Landrey starts crying and then gasping for air. Just 3 weeks prior she had open heart surgery. She coded four times. The nurse makes me keep going and her monitor alarms indicating her Oxygen was decreasing and her heart rate and rhythm were outside of normal range.

"Don't push it too far, or it will end up in her small intestines and it can't process the milk. Now let's check placement." She gives me my very own stethoscope. I take a syringe and fill it with air. I listen on the outside of her stomach to see if I can hear a little pop of air in the correct area. An inch further down I was told would be the small intestines. Then I wondered how I would be able to tell at home by looking at the outside of her body where her stomach was. I wished they could mark it with a sharpie. Apparently, they do not. Landrey quieted down. I took a breathe. Okay that's over.

The charge nurse starts pulling the yellow tube back out. Landrey starts screaming and gasping. The alarms sound again. The nurse looks firmly at me, "Again! You have to know this." I repeat the hardest thing I've ever done to date.

"Do you feel comfortable?" My now least favorite nurse asks.

I paused and completely lied. I thought I can do this. I will not crack. "Oh my goodness. Yes, I got it. I really do! I can do this." I would not put Landrey though any more torture. I will pay a nurse friend to come over if her tube comes out.

My heart was heavy all day. I had never been so scared. She was discharged to stay local. We took our little girl to the Ronald McDonald House, not home. We lived two hours away into Oklahoma. She wasn't allowed to be that far from a Peditric Cardiac ICU. That evening Joshua took our then 18-month-old Kourtney home to Oklahoma.

I stood there completely alone, looking at a fragile baby, on an Oxygen machine, a feeding tube and life saving heart and lung medicines prescribed with a delicate balance to keep her levels in range. I had to administer every hour.

"God I can't do this. You picked a journalist. You know this, right? You see this? I'm not a nurse. How am I going to do this tonight? I'm so alone. I'm the only one that knows what she takes, when she takes it, why she takes it, how to check it her If Oxygen is working, how to check the tube, how to clean her incision, how to save her life."

Little did I know that was the beginning of saying that same prayer for five years.

NG-tubes have been replaced by the heimlich if she chokes while having a seizure. Lung drugs have been replaced by epilepsy drugs. Intense monitoring white blood counts, t-cells and platelets are the norm. A year ago, I was told her heart is the closest it can come to the level of heart block that if you have four irregular beats in a row, a person is quietly and suddenly gone.

She's severely developmentally delayed. Every day, our sweet precious Landrey is a harm to herself. You have to be vigilant at all times, around a stove or stairs. So far, two highly prestigious medical centers haven't been able to tell us what exactly she has, why she has whatever it is, and what her future looks like or ours in her care.

"You picked a football coach and a journalist. You know that right, God. We are inept without You."

Today, she's five. Our pretty little warrior is five. Sometimes I wonder why God hasn't healed her yet, why she has to struggle in pain some days, why we stand financially drained. We've stood in faith. Our prayers haven't been answered.

Or maybe they have. Maybe this world needs to see what you do with your attitude, your mindset, your vision, your choices when every single day, you are not given what's easy, fair or right.

We won't back down. We trust Him. We give thanks for this little girl who gets to showcase His love and tenacity every single day.

To Landrey, happy 5th birthday!

Our hearts have been forever changed by yours. 

"The Lord will fight for you; you need only to be still.” Exodus 14:14

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