Today’s update: Saturday, August 22nd
In support of
Eliana Rivera
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Eliana Rivera
Eliana Update: Anguish, Hope and The Truth Somewhere Between Them
Last night, talking with one of my closest friends over dinner, we started talking about the Psalms and how they somehow capture the entire gamut of human emotion.
I have read the Psalms my entire life. But I don’t think I have ever understood them like I do now. I don’t think: I know I didn’t. And somehow, even that glorifies Jesus: suffering has made me inhabit these words in a way I never could before. I imagine many of you have experienced that too.
Right now, the Psalms feel like the only words capable of articulating what is happening in the deepest recesses of my soul. Somehow, words written thousands of years ago feel as though they were written specifically for me, for Shar, for Eliana, and for this moment.
They give language to something I don’t know how to reconcile: infinite anguish and audacious hope existing simultaneously. It’s wild.
Lament without surrender.
Questions without unbelief.
Desperation alongside praise.
Psalm 6 has been that for me:
“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?”
Psalm 6:2–3
How long?
I understand that question differently now.
The same questions about why this is happening to Eliana are alive and well today.
I don’t have the answer.
And increasingly, I am learning that God does not require me to pretend that I do. He seems perfectly willing to let me live with an enormous information gap: which, to my intense frustration, He apparently has no obligation to close.
The Psalm doesn’t hide the anguish. It brings it directly to Him.
And then, only a few verses later:
“The LORD has heard my plea;
the LORD accepts my prayer.”
Psalm 6:9
God hears us. He hears our aching. He is not at a distance but very much in the darkness and uncertainty with us.
That doesn’t mean I am okay.
These updates have become cathartic for me, but sometimes in an incredibly sobering way. Every time I write one, I am giving a status report on my beautiful baby girl. I am forced to put into sentences what has happened to her and how extraordinarily long the road ahead may still be. A road I am glad was not closed a week ago, like has happened to many other families.
That’s not lost on me.
How precious is this life we live.
I also realize that we naturally want these updates to be binary.
“Is she doing better?”
“Is this good news?”
“Are things looking positive?”
I understand why. I desperately want those answers too.
But what we are living isn’t binary.
I can be overwhelmed with gratitude that my daughter is alive while simultaneously devastated by what has happened to her.
I can celebrate seeing her eyes open while having my heart ripped apart because those same open eyes now allow me to see how much pain she is experiencing.
I can receive encouraging news from neurology while simultaneously hearing that her MRI is abnormal.
I can believe fiercely in her recovery while acknowledging that she remains critically ill.
Both can be true.
Both are true.
My feelings certainly don’t make navigating that tension any easier.
My nature is to attack problems. To problem solve. To engage. To fight. To fix.
And I cannot fix this.
There have been moments when I have felt pessimistic, frustrated, desperate, profoundly sad, helpless, even hopeless. There have been moments when I have felt like a failure because one of the most fundamental instincts I have as a father is to protect my daughter, and I encountered something from which I simply could not protect her.
But thank God our feelings don’t get the final word.
The Psalms don’t teach me to suppress my feelings. Quite the opposite. They teach me to bring every ugly, desperate, terrified emotion directly to God.
But Scripture also doesn’t teach me to make those feelings sovereign.
I can feel hopeless without concluding there is no hope.
I can feel abandoned without concluding God has abandoned me.
I can feel powerless without concluding God is powerless.
I can be terrified about Eliana’s future without allowing my fear to write her future.
Truth gets the final word.
And the truth I am discovering in a way I never wanted to have to discover it is that Jesus is here.
This isn’t a safe faith.
The God I am encountering through this isn’t a God I can domesticate into a comfortable, superficial version of Christianity where everything fits nicely into the picture I would have chosen.
He is not dangerous because He is capricious or cruel.
He is dangerous to every small, domesticated version of God I have ever tried to construct.
He is powerful.
He is mysterious.
He is sovereign.
He cannot be managed or reduced to something comfortable.
He can do what I cannot.
He meets us in places we desperately wish we had never entered.
He is not dangerously bad.
He is dangerously good.
There is no one like Him.
And somehow, amidst all of this, I can still say:
“Should this life bring suffering,
Lord, I will remember
what Calvary has bought for me,
both now and forever.
God, You’re so good.”
That is not something I say because this is good.
This is awful.
I say it because Calvary settled the question of His goodness long before I entered this hospital.
So with all of that said, here is where our girl is today.
Good things:
Eliana had another relatively stable night. That gives us another night of stability after an extraordinarily difficult stretch, and we are deeply thankful.
Respiratory:
This is potentially a very big day.
Eliana completed multiple pressure support breathing trials overnight, and they went very well. Her lungs and breathing have improved significantly.
They plan to do another trial today, and if she continues to demonstrate that she is ready, the goal is to extubate her later today.
That means taking the breathing tube out.
Please pray for this.
If successful, she would transition to less invasive respiratory support rather than having a tube down her throat. Beyond the obvious improvement in her comfort, removing the breathing tube creates an important cascading effect: less need for sedation, greater wakefulness, greater responsiveness, and eventually a greater ability to participate in her own recovery.
Chest tubes:
Her chest tubes were clamped yesterday, and so far there has been no significant reaccumulation of fluid.
The team plans to leave them in through the extubation process as a precaution. If extubation is successful and things remain stable, the hope is to remove both chest tubes tomorrow.
Two more tubes gone.
Two fewer foreign objects in our daughter.
Two more steps forward.
Infection:
Her fever has remained down, and today should be her final day of antibiotics.
That is good news, but it also creates something new to watch.
Once the antibiotics stop, the team will monitor her very closely to ensure the fever does not return. If it spikes again, additional imaging of her abdomen may be necessary to investigate whether an infection is hiding somewhere.
Please pray that the fever stays gone and that there are no new infections.
Pancreatitis and glucose:
Eliana still has pancreatitis.
Her glucose is currently stable, but it is being actively managed with insulin. So again: stable does not mean resolved.
The pancreatitis remains very real, and it is painful.
As she becomes increasingly awake, we can see that pain more clearly. There is something extraordinarily difficult about desperately praying for your daughter to wake up and then, when she does, realizing that her increased awareness also means she can more fully experience everything her body has endured.
Please pray that her pancreatitis heals quickly and completely, that there are no further complications, that her glucose regulation returns to normal so insulin is eventually unnecessary, and that God mercifully eases her pain.
Dialysis and kidneys:
Yesterday, Eliana had to be off continuous dialysis for approximately four hours for her MRI.
She tolerated that without complication and transitioned successfully back onto continuous dialysis afterward. It is currently working well, and we are thankful for that.
The short term goal eventually is to move from continuous dialysis to intermittent dialysis, but she is not ready for that yet.
There are still several gates she has to pass, and she remains critically ill.
When that transition eventually happens, however, it will be significant. She won’t be continuously attached to the machine. She will have substantially more freedom to move and participate in physical therapy. She can begin rebuilding a body that has experienced significant muscle loss and atrophy from lying in this bed.
Movement creates more movement.
Strength creates more strength.
One step begins enabling another.
But we aren’t there yet.
And most importantly, her kidneys still have not produced urine.
They remain in acute failure.
The team continues watching her blood counts, including her platelets and hemoglobin, for evidence that the active HUS process is resolving. Her platelets are no longer precipitously falling, which is encouraging, but we have not yet seen the sustained upward movement we desperately want.
So please continue praying:
HUS, leave her body.
Platelets, rise.
Hemoglobin, stabilize and recover.
Kidneys, wake up.
And please, God, let our little girl pee.
Something so mundane. Something we have taken for granted our entire lives. And now something we would celebrate with tears.
Cardiovascular:
Throughout everything Eliana has endured, her heart has remained healthy.
There have been no significant cardiovascular complications, and that remains true today.
We are extraordinarily thankful for that.
Blood pressure:
Her blood pressure, however, remains labile. It has improved, but it still fluctuates, particularly when she sleeps, and she continues to require some medication to maintain adequate pressure.
Eventually, her body needs to demonstrate that it can regulate and maintain stable blood pressure independently: awake, asleep, moving, resting, irrespective of her state.
She’s improved.
But she’s not there yet.
Please pray for continued stabilization and eventually complete independence from blood pressure support.
And now, neurologically.
This is the longer and more complicated update.
Yesterday, Eliana had her MRI.
We prayed boldly for a clean MRI.
We invoked Luke 18:27:
“What is impossible with man is possible with God.”
I understand the immediate context of that verse is the impossibility of accomplishing salvation through our own ability. But Jesus’ words reveal something fundamental about the nature and power of God:
He can do what we cannot.
I believed He could move in Eliana’s body.
I still do.
I didn’t presume to know what He would do, but I knew what He was able to do.
So we asked for what seemed impossible.
A clean MRI.
Today, we got the results.
The MRI was not clean.
That hurts to write.
I’m not going to manufacture a victory where there isn’t one.
But neither did the MRI show some of the catastrophic things we feared.
The blood vessels in Eliana’s brain look very good.
There is no evidence of a stroke.
There is no massive area of brain injury.
Those are incredibly important things, and we are profoundly thankful for them.
But the MRI does show abnormalities in several areas of her brain, including areas around the thalamus.
Right now, the neurologists cannot tell us exactly what those abnormalities will ultimately mean.
Some of what they see may represent inflammation that can improve with time. And neurological healing does not necessarily happen overnight: it may unfold over weeks, months, or longer.
There may also be areas representing actual injury with more lasting effects. Inflammation itself can coexist with injury, making it difficult right now to determine exactly what is reversible and what, if anything, may ultimately be permanent.
We simply don’t know yet.
And neither do the neurologists.
What they do know is encouraging.
Eliana can track us with her eyes.
She can see.
She can feel.
Her reflexes are good.
She can move.
She doesn’t move well yet, but after everything her body has endured, that isn’t surprising.
She got her ass kicked.
She responds to us.
She answers simple yes and no questions.
She is present.
Based on what they are seeing right now, the neurological team does not anticipate a major physical disability and is optimistic that she can recover close to fully.
What “close to fully” ultimately means, however, nobody can define today.
The larger uncertainties are cognitive, emotional, and psychological.
Could there be challenges with memory? Learning? Processing? Attention? Accessing things she once accessed effortlessly?
Possibly.
Could some of those abilities remain intact but require time and therapy for her brain to access them effectively again?
Possibly.
Could there ultimately be areas where injury creates a lasting limitation?
Possibly.
Nobody knows.
That’s right: a world class neurology team at a world class hospital cannot fully tell us what this will mean yet.
That is not a criticism of them. They have been extraordinary.
It is simply a humbling reminder of the limits of human knowledge.
They can see extraordinarily far.
But only God sees the whole picture.
And right now, there isn’t another MRI planned.
Because at this point, the most important evidence isn’t going to come from another picture.
It is going to come from Eliana.
What does she show us?
What does she remember?
How does she communicate?
How does she learn?
How does she move?
How does she respond to therapy?
What does her brain do over the coming days, weeks, and months?
The MRI is a picture of what Eliana’s brain looks like after what it endured.
It is not a picture of everything Eliana will become.
Our hearts dropped hearing that the MRI wasn’t clean.
But we are not fatalistic.
We are not conceding anything.
And we are not accepting second place.
The fact that we are even discussing rehabilitation is extraordinary to me.
There was a moment when I didn’t know whether my daughter was going to survive less than a week ago.
Now we’re talking about how we’re going to help her recover.
Think about that.
Generic platitudes and positive vibes don’t get you here. Fervent prayer, people genuinely interceding for our daughter, and a kick ass medical team faithfully stewarding their gifts under God’s providence, whether they recognize His hand in it or not, have helped bring us to this moment.
We’re talking about therapy.
We’re talking about movement.
We’re talking about cognition.
We’re talking about rebuilding.
We’re talking about progression.
So that is exactly what we’re going to do.
We’re going to attack this with perseverance.
With fierceness.
And with grace.
Fierceness because we’re going to fight for every bit of recovery available to our daughter.
Grace because this will not necessarily be linear. There will be difficult days. There will be frustration. There may be things that once came easily that suddenly don’t. There will be moments when Eliana needs us not to measure her against who she was before HUS, but to stand beside who she is becoming as she fights her way back.
And Jesus will walk beside us through every inch of it.
Yesterday, one of the deepest prayers of our hearts was simply this:
Please let our little girl still be in there.
Today I can tell you:
She is.
She opens her eyes.
She looks at us.
She responds to us.
She answers us.
She is increasingly awake.
And yes, that also means we now see her pain.
Watching that is brutal.
But she’s here.
Eliana is here.
And I refuse to withhold praise for what God has already done simply because I don’t know how the rest of the story ends.
There were moments when we didn’t know whether she would survive.
She’s alive.
There were seizures.
They stopped.
There was a little girl buried underneath sedation, machines, tubes, neurological insult, kidney failure, and this horrible syndrome.
We begged God to let her still be underneath all of it.
And now we see her.
So no, I will not restrain my lips.
I will praise Him for what He has already done while continuing to plead with Him for everything still ahead.
And to all of you:
We know you have lives.
You have children. Marriages. Careers. Aspirations. Responsibilities. Your own suffering. Your own people who need prayer.
There is tragedy everywhere, and we know that even prayer can become exhausting when the need doesn’t end quickly.
And right now, I cannot tell you when our need for your prayers will end.
But somehow, you continue showing up.
You continue praying.
You continue interceding.
You continue carrying our daughter before God when you have absolutely no obligation to do so.
Shar and I feel it.
We are beyond thankful.
Please don’t stop.
Continue praying for successful extubation.
Continue praying for no infection.
Continue praying for her pancreatitis and her pain.
Continue praying for stable blood pressure.
Continue praying for neurological healing.
Continue praying for her cognition.
Continue praying for platelets to rise.
Continue praying for her kidneys to wake up.
Continue praying for urine.
Continue praying for HUS to finally and completely leave our daughter’s body.
And continue praying for the things we don’t even know enough to ask for yet.
And today, even amidst anguish, uncertainty, abnormal MRIs, kidney failure, machines, pain, and a tremendously long road ahead, I can still say:
God, You’re so good.
Not because this is good.
But because He is.
And Calvary settled that question for me long before HUS ever entered our lives.
“The LORD has heard my plea;
the LORD accepts my prayer.”
Psalm 6:9
So we keep praying.
We keep fighting.
We keep praising.
And we keep walking forward with our girl.
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