Today’s update-from Emo

Eliana Update — Praises & Prayer Requests

Before getting into today’s update, I want to start with the Psalm that has been on my heart today.

Psalm 6:2–3

“Be gracious to me, O LORD, for I am languishing;
heal me, O LORD, for my bones are troubled.
My soul also is greatly troubled.
But you, O LORD—how long?”

“How long?”

That question resonates deeply today.

How long can I endure the anguish of watching my daughter suffer? How long does Eliana have to endure the pain, the procedures, the machines, and this syndrome ravaging her body? How long do Shar and I have to watch our little girl fight through something no seven-year-old should have to fight?

I don’t think God stands at a distance judging those questions. I believe He desires to hear what comes from the deepest recesses of our hearts. I believe He aches with us in what is happening to our daughter.

And then Psalm 6 ends with this:

“The LORD has heard my plea;
the LORD accepts my prayer.” — Psalm 6:9

I believe He hears us.

And while I plead with Him for Eliana’s healing—and while we are beginning to see incredible signs of progression—He also continues to cover us with His presence.

Right now, His presence is enough.

There is no greater comfort available to me in this darkness than knowing Jesus is here. He is with Eliana. He is with Shar. He is with me. He is not absent from this suffering.

So we continue to plead. We continue to pray. And today, we also have some incredible things for which to give thanks.

Good things:

• Another stable night. Last night was another relatively stable night—and actually a little better than the previous ones. That makes three stable nights in a row after an extraordinarily difficult period.

• Continued neurological stability. More time has passed without seizures or other adverse neurological events. We are incredibly thankful for every additional hour of stability.

• Her lungs have improved significantly. Yesterday, Eliana completed a pressure-support breathing trial for approximately an hour, where the ventilator allows her to do much more of the breathing herself. She didn’t crush it, but she didn’t do poorly either. Today they will continue these trials, allowing her lungs to work and strengthen.

• Her heart continues to do well. We remain incredibly thankful that there have been no new cardiovascular complications.

• Her chest tubes continue to produce very little fluid. The plan is potentially to clamp them after her MRI today and monitor her overnight. If fluid does not reaccumulate, the hope is that both chest tubes can be removed tomorrow. That would mean two fewer pieces of plastic in our little girl’s body and another tangible step forward.

• Her abdomen looks a little better today. Infectious Disease has not found evidence of an infection in her abdomen. They continue to watch her pancreatitis closely, but right now there is no indication of infection there.

And then there is this:

Yesterday, we shared one of the deepest desires of our hearts: that Eliana would open her eyes and respond to us.

Today, part of that prayer was answered.

She opened her eyes.

She responded to simple commands.

And for the first time in what feels like forever, we saw our little girl.

Today she even sat upright with the physical therapist. It was extremely difficult for her. It was uncomfortable and painful. As her dad, I hate seeing her hurt.

But right now, even that difficulty tells us something: she is here.

Pain reminds us that we are alive. And as much as we hate seeing her experience it, there was something beautiful about seeing our daughter fighting through it.

There is still an extraordinarily long road ahead.

But she’s there.

And that matters more than I can adequately put into words.

What we are praying for today:

Neurologically — today is a big day.

Eliana is scheduled for an MRI at 4:00 p.m.

We met with the neurological team, and the MRI will help them characterize whether there has been brain injury, the extent of any injury they find, and what that could mean in the short, intermediate, and long term.

The MRI is not expected to substantially change the immediate treatment of her HUS, which remains primarily supportive care. Rather, it will give the neurological team important information about what her brain has endured and, as she emerges from this acute illness, what recovery or treatment may be necessary.

So please pray boldly with us:

Pray for a clean MRI. Pray that it shows no significant brain injury. Pray for complete neurological healing and restoration. Pray that Eliana—in her fullest—comes back to us.

Respiratory: Please pray that she continues to grow stronger during her breathing trials today and that the breathing tube can come out very soon.

Removing that tube is an important domino. It means less sedation. Less sedation means greater wakefulness and responsiveness. Greater responsiveness allows us and her medical team to understand more clearly where she is neurologically and allows Eliana to begin participating more actively in her own recovery.

Abdomen and pancreatitis: Her abdomen looks somewhat better today, and there is currently no evidence of infection. Please pray that her pancreatitis continues to heal, that her abdominal distention continues to decrease, and that dialysis continues successfully removing the excess fluid her body is carrying.

Blood pressure: Her blood pressure remains labile, meaning it can fluctuate significantly, particularly as her body responds to HUS, medications, and fluid removal through dialysis. Please pray for increasingly stable and normalized blood pressures.

Chest tubes: Please pray that after they are clamped, no fluid reaccumulates and that tomorrow both tubes can safely be removed.

Kidneys: This remains one of our biggest prayers.

Eliana’s kidneys are still in acute failure, and she remains dependent on continuous dialysis.

Please pray that her kidneys wake up.

Pray for healing. Pray for kidney function to return. Pray for urine. Something so ordinary that we never imagined we would someday desperately plead with God to see it.

And ultimately, above every individual organ, test, machine, medication, and number:

Pray that HUS simply leaves Eliana’s body.

No more organs affected.
No more complications.
No more ground surrendered to this disease.

Let the damage stop, and let the healing continue.

Yesterday, we wrote about the deepest desires of our hearts. We prayed that Eliana would open her eyes. That she would respond. That underneath the sedation, the neurological trauma, the machines, the tubes, and everything HUS has thrown at her, our little girl would still be there.

Today, God allowed us to see some of her.

So we keep praying.

We keep pleading.

We keep asking boldly for what comes next: the MRI to be clean, the breathing tube to come out, the chest tubes to come out, sedation to decrease, her kidneys to wake up, dialysis eventually to become intermittent, her body to begin moving again, and our daughter to continue emerging from underneath everything she has endured.

We are not confusing progress with the finish line.

Eliana is still critically ill.

Does she still have a tremendously long way to go? Yes.

Are there still frightening unknowns ahead of us? Absolutely.

But today, she is here.

And today, for the first time in a long time, we didn’t just see a little girl lying in that hospital bed.

We saw Eliana.

Our daughter.

Our feisty, beautiful, courageous seven-year-old.

Eliana Harmony Rivera is still here with us.

And we can see God’s mighty hand at work.

So please keep contending for her. Keep bringing her before God. Keep praying the prayers we know how to speak and, perhaps even more importantly, the prayers that are too deep for us to find words for ourselves.

“The LORD has heard my plea;
the LORD accepts my prayer.”

Today, we believe that.

And today, we keep praying without ceasing.