9 Sep | Eliana Update
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Eliana Rivera
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Eliana Rivera
A lot has happened since my last update Sunday morning, and this one is mostly about celebrating a few pretty incredible milestones.
Sunday, Eliana had her dialysis catheter removed.
I wish you could have been in the room. She was completely calm. Still. Peaceful. She would intermittently glance over at me during the procedure, and I would calmly look back at her. Except I was basically a duck: calm above the water while my feet were moving violently underneath it.
She wasn’t.
She has approached almost everything put in front of her with this incredible combination of fortitude, calmness, and peace. I am incredibly thankful to God for providing that to her.
And everything went exactly as planned.
That sentence means more to us now than it probably ever has before. So much over these past five weeks has not gone according to plan. This did.
Getting that line out of her neck represented something enormous. It was there because her kidneys had completely failed. Now it is gone because her kidneys are taking their job back.
Her BUN and creatinine continue to fall without dialysis, demonstrating continued native kidney recovery. When she received her first intermittent dialysis treatment in the ICU, the expectation was that dialysis would continue. The team walked us through additional treatments, eventually removing the temporary catheter from her neck and, if she continued needing dialysis longer term or as an outpatient, transitioning to a tunneled dialysis catheter in her chest.
We were preparing ourselves for that next chapter.
It never came.
She left the ICU and never needed another dialysis treatment.
Not one.
Her kidneys responded far more quickly than anyone expected, and instead of replacing one dialysis catheter with another, they simply removed it.
We understand physiologically what is happening. Her kidneys are recovering. But we give all glory to God for how her body has responded.
That line coming out wasn’t just another procedure.
It was the end of dialysis.
I wish you could have also seen Shar walk into the room afterward and see that line gone. She was overcome. She just wept. Not from fear this time, but from joy. It was an honor as her husband just to stand there and watch my wife rejoice over something we had prayed for, pleaded for, and wondered if we would ever see.
And then another subtraction: the feeding tube came out too.
Only days earlier, we were preparing for the very real likelihood that Eliana would go home with it. Instead, she began eating and drinking enough on her own that it was no longer needed.
Afterward, Shar wrapped her arms around Eliana, and Eliana wrapped hers around her mom. Eliana understood exactly what had just happened and what these things being gone meant.
I don’t know if you can watch peace being embraced, but that’s what that moment looked like to me.
Video — dialysis line and feeding tube gone, and Shar embracing Eliana:
Watch the video: https://drive.google.com/file/d/1XU6o1_a-HpLBPrXry35GF7gO4QmZdCYw/view?usp=drivesdk
Watch the video: https://drive.google.com/file/d/1XU6o1_a-HpLBPrXry35GF7gO4QmZdCYw/view?usp=drivesdk
Right now, the primary medical issue we’re still managing is the fluctuation in her glucose and insulin as her pancreas continues healing from the pancreatitis. We expect we may have to manage that for a while. But even nutritionally, it is amazing how far she has come. And now Shar gets to take the expertise and skill set she has used to improve the nutrition and performance of world-class athletes and turn all of that attention toward rebuilding our daughter.
And the acceleration has continued.
Her physical therapy continues to show how exponentially stronger she is becoming. That positive feedback loop I wrote about previously seems to be happening right in front of us. Eating helps her strengthen. Strength helps her move. Movement builds more strength. And slowly, her voice is coming back too.
Somehow, “Way Maker” has become an anthem for Eliana through all of this.
To be transparent, it was a song I never really thought much about before. I could sing it. I believed the words were true. But I don’t know that they ever really landed with me.
I think part of the reason is that, though I know even my salvation is a gift from God, the reality is that I spent much of my life operating as though everything else was largely my own doing. My capabilities. My gifts. My strength. My ability to work harder, solve the problem, figure it out, and take care of the people I love.
Then Eliana was ripped away from me, and I was stripped of all my agency.
There was no amount of strength, intelligence, work ethic, money, planning, or problem solving that could make my daughter’s kidneys work, make her breathe, stop her seizures, or keep her alive.
I could not fix it. I could not control it. I could not save her.
I was completely at God’s mercy.
Maybe some of you have always understood deeply that everything around you is a gift from God. If you have, God bless you. What a gift it is to see the world that way.
I didn’t.
And part of my own journey through this, for good or for bad, has been realizing that now.
Maybe that’s why this song lands so differently today. And why watching my daughter, who for weeks couldn’t make a sound, slowly getting her voice back and singing “Way Maker” feels almost impossible to describe.
The picture attached to this update, her smile, and those words pretty much say the rest.
Video — Eliana singing “Way Maker” as her voice begins to return:
Watch the video: https://drive.google.com/file/d/1Pnnxp6dVkNpdPufFpom68KiQ8WL64tr7/view?usp=drivesdk
Watch the video: https://drive.google.com/file/d/1Pnnxp6dVkNpdPufFpom68KiQ8WL64tr7/view?usp=drivesdk
And yesterday came another kind of freedom.
Because of the infection that caused her HUS, Eliana has remained under strict contact precautions throughout this hospitalization. She needed consecutive stool tests showing no organism detected before those restrictions could finally be lifted.
She got them.
So yesterday, for the first time in almost five weeks, our daughter went outside.
Almost five weeks without stepping outdoors. Five weeks of hospital rooms, hallways, fluorescent lights, machines, procedures, and alarms.
And then the doors opened.
Shar took her outside into the bright Colorado sun for the first time in over a month. I wasn’t there for it, but Shar sent me the video, and getting to watch our daughter simply be outside again was pretty incredible.
Video — Eliana going outside for the first time in almost five weeks:
Watch the video: https://drive.google.com/file/d/1I-rAGc-v6inB-D_GFnGamU_RWZBtMlsL/view?usp=drivesdk
Watch the video: https://drive.google.com/file/d/1I-rAGc-v6inB-D_GFnGamU_RWZBtMlsL/view?usp=drivesdk
It finally feels like His goodness is running after us again.
Not because God wasn’t good in the darkness. He was. But right now His goodness feels so incredibly palpable.
And I want to be careful about how I talk about Eliana. I love this little girl more than I can explain. She is incredibly strong. She has shown extraordinary resilience, fortitude, and peace.
But ultimately, this isn’t a story about how strong Eliana is.
It’s about how strong Jesus is.
Whatever strength she has displayed, whatever strength Shar and I have somehow found, whatever healing her body has accomplished, we believe all of it has been sustained by God Himself.
And I know there is one question many of you are probably wondering, and frankly, it is one I have almost been afraid to ask myself:
Is Eliana actually coming home?
It is amazing that we even get to ask that question.
And the answer is: very soon.
If everything continues moving in this direction, we expect Eliana to be discharged as soon as this week. I will give you another update when everything is finalized about exactly when, what that transition looks like, and what comes next.
But it is close.
Really close.
And because I’m being a little selfish, I wanted to share one more picture with this update.
For weeks, I have thought about what it would be like to simply hold my daughter again. Not around tubes. Not around wires. Not around dialysis lines, feeding tubes, machines, pokes and prods.
Just hold her.
Yesterday, I got to do that for a long time.
Shar took that picture before she left and I took over the night shift. What the picture doesn’t show is that eventually Eliana fell asleep on me.
And I just sat there holding my daughter.
There is something about that picture that means more to me than an embrace. It’s belonging. Intimacy. Healing. Love. Security.
There was nowhere else I wanted to be. She was my daughter, in my arms, where she belonged. And as she eventually fell asleep against me, completely safe and at rest, I couldn’t help but think about the Fatherhood of God.
Scripture calls us children of God. Somehow, holding my own child after longing for weeks just to hold her like this made that truth feel different.
If there is anything good and true in this almost unbearable longing I have had to gather my daughter into my arms, then it must only be the faintest reflection of the heart of our Father toward His children.
He is sovereign. He is King. But He is not a distant King.
And we don’t have to speculate about whether He desires to draw near to us. The cross has already settled that.
Maybe that’s what that picture represents to me more than anything else. Not merely an embrace, but belonging. Intimacy. Healing. Love. Security. A child at rest in her father’s arms.
And perhaps, in some small and imperfect way, a glimpse of home.
Paul tells us in Philippians 4:8 that whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is anything excellent or worthy of praise, we should think about these things.
I’ve had plenty to think about over these last five weeks.
This is something I want to think about.
My daughter in my arms. Safe. At peace. Nothing between us.
And the faintest glimpse of the heart of my Father toward me.
I think I’ll meditate on that for a while.
Emilio Rivera
1 day ago
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