Update 7 - The hardest lesson I’ll ever have to learn is holding her, without you.

I know your life, so far’s a struggle

But I promise you, it’s worth the pain. 

I stand here now and I sing and I pray

For healing power, somehow someway. 

I hold your hand, I know your fighting. 

Keep sailing girl, this River won’t run dry.

Cling to each breath, like a wing to the wind. 

Don’t give up. You’re a raging River. 

I’m leaving now. Our family needs me. 

Please find rest, and I’ll try my best too. 

I’m leaving you, But please don’t leave me. 

Keep fighting girl. I’ll be back Real soon. 

I am a child, I don’t understand. 

I’d sacrifice everything to have you holding my hand. This nightmare won’t end. We should all be together. I’ll be here with them, but I’m missing you. 

She needs me now, But you do too. 

I hate the silence. This quiet kills. 

In the darkness I hold you. I dance in this ring of fire. 

Last weeks dreams and desires are the fuel, scattered round this raging inferno. 

Their Ashes drift around this room. 

But in your eyes now, I see light. 

Your mother says, “her eyes are yours.” 

But right now it’s hard to see. These tears are blinding. 

I promise to see. And someday to be present. 

Here in mind, body, and spirit. Three-in-one. 

My body’s here, but my thoughts are a raging River. 

I love you girl goodnight, please rest, I’m right here. 

I am a child, I don’t understand. 

I’d sacrifice everything to have you holding my hand. This nightmare won’t end. We should all be together. I’ll be here with them, but I’m missing you. 

Each new moment is the hardest yet. 

But I breathe in. Each step I learn new perspective. New ways to cope with the pain. But the hardest lesson I’ll ever have to learn is holding her, without you.  

We rocked back and forth. All night long. I danced with her. I thought of you. 

Each new moment is the hardest yet. 

But I breathe in, and Bravely face my demons. I hope some day to be reunited. You, me, and her. 

While I was gone River continued to have seizures. Loss. They replaced the intermittent phenobarbital with a continuous drip of Versed. She had three seizures this morning after the Versed. Loss. The dopamine is still maxed out. Loss. They have been able to eliminate the epinephrine and her blood pressure is stable. Win. She is so bloated; A complication of her failing kidneys. She is being given a diarrhetic to help flush the kidneys and let them heal. However it’s a balancing act. Too much diarrhetic helps the kidneys, but could complicate the stability in her blood pressure. Push. Her liver, heart, and Kidneys can recover, but the brain will not recover. Loss. They doubled the dose of Versed to try and control the Seizures. We need an accurate MRI to better understand what brain function is there and possible. 

She is a house of cards. She is about a stable as a $5 plastic chair from Walmart. The longer she is exposed to this ultraviolet treatment without an miracle the weaker her chair gets. Please God don’t let someone kick the chair leg. 

A little levity. 

https://youtu.be/gFkMtYPm3j8

I’m back at the hospital. Here until tomorrow at 9:30am when I leave to go to Miller’s first Dr. appointment.