Today’s Update-Sunday evening 8/23
In support of
Eliana Rivera
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Eliana Rivera
Eliana Update: Numbness and Taking Things Back
First, I owe some of you an apology: my last couple of updates have been protracted.
Apparently brevity is not a gift of mine.
So, for those of you who are faithfully praying for our girl but don’t have time to read another dissertation from her dad, here are the prayer requests first.
For everyone else who wants to know what happened yesterday and today, and perhaps a little of what God is continuing to work out in my heart through all of this, that is below.
What we need you praying for
Respiratory:
Pray that Eliana’s airway clears completely, that the mucus and secretions dissipate, that her lungs continue getting stronger, and that she can breathe powerfully and peacefully on her own without any respiratory augmentation.
The breathing tube is out, praise God, but the respiratory work is not finished. Pray for no setbacks or complications and continued progression toward complete respiratory independence.
Breathing well is likely the main catalyst for really good rest, and this is what we are hoping for.
Kidneys:
Pray that her kidneys wake up. They remain in acute failure, and she is still dependent on continuous dialysis.
Pray for her platelets to begin rising, her hemoglobin to stabilize and recover, and for all of these markers to increasingly demonstrate that HUS is finally leaving her body.
And please, God, let our little girl pee.
Dialysis:
Pray that we can move from continuous dialysis to intermittent dialysis much sooner than anticipated. There is potentially line of sight to that within roughly a week, but we are asking God to truncate that timeline.
Intermittent dialysis would mean substantially more freedom to move, more PT, potentially eventually standing, and it would begin opening conversations about getting out of the ICU.
Nutrition and her gut:
Eliana is beginning feeds today. Pray that her gut accepts them, that she has healthy stool movement, that her body absorbs the nutrients it desperately needs, and that nutrition becomes another catalyst for healing and rebuilding.
Pancreatitis:
Her abdomen remains tender and painful, and the pancreatitis is still very much present.
Pray that the inflammation decreases, that her pancreas heals completely, that her glucose continues stabilizing, that her pain decreases, and especially that the pancreatitis does not worsen or create another complication.
Blood pressure:
She continues to require a relatively small amount of blood-pressure medication.
Pray that her body begins regulating her blood pressure independently and that she can safely come completely off that support.
Neurological healing:
Continue praying for no seizures or additional neurological injury.
Pray for healing of the injury we already know exists and that, when Eliana is healthy enough to begin real rehabilitation, her brain demonstrates an extraordinary capacity to recover, adapt, learn, remember, communicate, and move.
High cognition.
Sedation and withdrawal:
Her sedation is being reduced, which is another positive step, but her body has been exposed to powerful medications for a prolonged period. Some withdrawal is expected.
Pray that it is minimal and manageable and that God sustains her as she walks through it.
Infection:
She is now off antibiotics, and so far her fever has not returned.
Pray that it stays that way. Pray for no hidden or new infection and that every line, tube, medication, and intervention that can safely leave her body continues doing exactly that.
And above all of it:
HUS, leave, please.
Now, for those of you still reading, here’s where our little lady is today.
Yesterday was a really big day
Yesterday, Eliana continued progressing respiratory-wise and successfully completed the pressure-support trials necessary for the team to move toward extubation.
And then they did it.
They took the breathing tube out.
I wish I could tell you I was the watcher on the wall for the entire thing, but I wasn’t.
I had gone home for a little bit and apparently my body had other plans. I passed out. I was exhausted.
Shar stepped out during the actual procedure because that was easier for her, and thankfully Dwight was there with Eliana and was calm as could be throughout the entire thing.
The extubation went well.
Afterward, Eliana transitioned to non-invasive respiratory support through a mask, which continues to this moment.
And then, while I was driving back to the hospital during the procedure, I called Dwight, who talked to me right after it.
Once the breathing tube was out and Eliana had transitioned to the mask, Dwight messaged Shar and told her she could come back to the bedside. Shar came back in, and they gathered around Eliana.
In those first moments after extubation, Shar asked her:
“Can you say Mom?”
Eliana could not use her voice.
She still can’t.
But she understood.
And she mouthed:
“Mom.”
I wasn’t there to see it. I heard about it while I was driving back in.
When I finally parked, I ran into the hospital.
I have absolutely no idea why I was running. It’s not like those extra few seconds were going to make any difference. I probably looked like a complete doofus running through the hospital, through security, and up toward her room.
But apparently I needed to run.
I got into her room, put my stuff down, went over to her bedside, and was just overwhelmed with joy to see her there without that breathing tube.
After a few moments, I looked at her and asked:
“Can you say Dad?”
Again, she couldn’t use her voice.
But she mouthed:
“Dad.”
I knew she knew who I was.
I knew she understood what I was asking her.
And most importantly, I knew she was there.
We already had evidence that she was present. We knew she could track us. We knew she could respond to simple commands.
But this was different.
Our daughter recognized us.
She knew Mom.
She knew Dad.
Mom.
Dad.
Two words she couldn’t actually speak.
Two words she could only form silently with her mouth.
Two words that meant almost everything to us.
Only days earlier, her lungs required complete support. She had experienced a collapsed lung. There were moments when I genuinely didn’t know whether she would survive.
And yesterday, without a breathing tube down her throat, our daughter looked at each of her parents and mouthed our names.
Praise God.
So now what?
This is something I continue learning about recovery: sometimes accomplishing one goal simply reveals the next hurdle.
Eliana still has a tremendous amount of mucus and secretions in her airway. Her throat and upper airway have been through hell. She is extremely hoarse and raspy and cannot really speak yet.
Clearing everything is uncomfortable. Sometimes painful.
There isn’t really a shortcut.
There’s no way but through it.
So we hold her hand.
We reassure her.
We tell her we’re right here.
We encourage her to keep going.
But I want to be clear about something I am increasingly understanding:
She is the one traveling this road.
We say “we’re going through this,” and in one sense Shar and I absolutely are.
But it is Eliana’s body experiencing this.
Her lungs.
Her kidneys.
Her brain.
Her pancreas.
Her weakened muscles.
Her throat.
Her pain.
Her withdrawal.
Her seven-year-old mind trying to comprehend whatever she can comprehend about what has happened to her.
We can hold her hands.
We can advocate for her.
We can love her.
We can pray over her.
We can refuse to leave her.
But we cannot climb this mountain in her place.
And perhaps our prayer cannot always be that God removes every difficult piece of the road in front of her.
Sometimes there is no way but through.
So we pray that Jesus sustains her through what cannot simply be taken away.
Another two tubes gone
Her chest X-rays showed no meaningful reaccumulation of fluid.
This morning, they clamped both chest tubes and watched her closely for approximately four hours.
Still no significant accumulation.
So this afternoon:
Both chest tubes came out.
Two more foreign objects removed from our daughter’s body.
And once again, she crushed it.
They don’t put her under anesthesia for that. She has to breathe through the removal. The acute pain is relatively short-lived, but it hurts.
We could see it.
And once again, we got another glimpse of just how freaking tough this little girl is.
She’s a savage.
Seven years old, and every single day she is teaching me something about grit, resilience, perseverance, and courage that I thought I already understood.
I didn’t.
Within roughly a day, the breathing tube and both chest tubes have left her body.
Three significant pieces of equipment gone.
We’ll take that.
Other good things
Cardiovascularly, her heart continues doing very well.
We remain profoundly thankful that throughout everything her body has endured, we have not seen significant cardiovascular injury.
She also stopped antibiotics yesterday.
So far, her fever has not returned.
That is a big deal.
Her abdomen remains distended, but it is not worsening, and there is currently no indication that a new bacterial infection is driving it.
Again, we’re learning to celebrate subtraction.
One less antibiotic.
One less medication.
One less tube.
One less machine.
One less thing being done to her body.
The goal, eventually, is none of it.
We’re nowhere close to that yet.
But we’re moving.
Neurologically: the absence of news is good news
There isn’t a dramatic neurological update today.
We hope this part of the movie is as anti-climactic as possible.
PT came again today.
And increasingly, movement is medicine for Eliana.
Getting the breathing tube out unlocked more freedom to move.
She remains heavily medicated. She is profoundly weak. Her body has experienced significant atrophy after lying in this bed critically ill for so long.
Rebuilding that will take time.
A lot of time.
But today they stretched her.
Moved her.
Stimulated her muscles.
Shar and I massaged her and helped stimulate her body.
Then they sat her upright.
And our girl held her head up.
She contributed to sitting.
Again, think about the absurdity of what now makes us celebrate.
A healthy seven-year-old holds her head up without anyone noticing.
Our daughter does it after everything she has endured, and it feels epic.
Because it is.
That was earlier in the day.
Later, her brothers came to visit.
By then, PT was over and Eliana was back lying in bed.
This was the first time they had seen her since Sunday.
The last time they came to the hospital, I rushed them here because their sister had crashed and all signs indicated that their sister might die that same morning. I wanted them to have the opportunity to give her a kiss and say goodbye.
Think about that.
They’re 10, 13, and 17 years old. They don’t have some magical framework for processing something like this. They miss their sister. They love her. And they hate seeing her this way.
But this time, they got a very different picture of their sister than the one they had seen on Sunday.
She was lying there, yes.
She was still critically ill.
She was still sedated.
But she was awake.
And she was responding.
At one point Emilio came to her bedside, waved, and said:
“Hi, Eliana.”
And Eliana tried to raise her right arm to wave back at him.
She couldn’t quite get it up.
Who cares?
She tried.
She saw her brother. She recognized him. She understood what was happening. And her little body tried to respond.
Tiny movement.
Monumental moment.
Epic.
Apparently her brothers can still motivate her, despite what I am sure is her deeply held conviction that they are all incredibly annoying.
Some normal sibling dynamics surviving HUS would be just fine with me.
Taking things back
There is a theme emerging today that I don’t want to overstate, because we are nowhere near finished.
But for so long, medicine has essentially been doing things for Eliana that her body could not do for itself.
Machines breathed for her.
Dialysis filters for her kidneys.
Medications support her blood pressure.
Insulin helps regulate glucose.
Sedation kept her body safe while machines and procedures did their work.
Nutrition has had to be provided artificially.
Increasingly, the prayer is that Eliana’s own body begins taking those jobs back.
Lungs: take your breathing back.
Kidneys: take filtration back.
Gut: take nutrition back.
Cardiovascular system: take blood-pressure regulation back.
Muscles: take movement back.
Brain: take all operation back.
The breathing tube leaving was one of those moments.
The chest tubes leaving were another.
Beginning feeds is another.
Reducing sedation is another.
And eventually, God willing, continuous dialysis becomes intermittent dialysis.
Intermittent becomes no dialysis.
ICU becomes a different floor.
A hospital room becomes rehabilitation.
Rehabilitation becomes home.
We aren’t there.
But for the first time, some of those words don’t feel completely hypothetical.
And now I’ll tell you where I am today.
Part of why I keep writing these updates is for you. Part of it is for me.
But I’m also writing them for posterity.
I’m writing them for Eliana.
I pray there comes a day when she can sit down and read all of this herself. I want her to know what happened to her, certainly, but I also want her to know where her dad’s heart and mind were while it was happening.
I want her to know what I prayed.
What I feared.
What I believed.
Where I doubted.
Where I felt God’s presence.
Where I couldn’t feel Him at all.
I want her to see the vulnerability of the present rather than some sanitized version of the story I might construct years from now after I already know how everything turned out.
Because hindsight does something to stories.
We exaggerate some things. We minimize others. We connect dots that weren’t connected when we were actually living them. Uncertainty becomes inevitability. Fear becomes courage. Sometimes we unconsciously clean up the mess because we already know what happened next.
I don’t want to do that.
I want Eliana to someday read what her dad wrote when he didn’t know what happened next.
I think testimony matters.
And I think honest testimony matters even more.
So I’m trying to leave the uncertainty in the uncertainty.
The anguish in the anguish.
The joy in the joy.
The faith in the faith.
The doubt in the doubt.
And apparently today:
The numbness in the numbness.
Because if God is writing a story through all of this, I don’t want to rewrite His story afterward into something cleaner than it actually was to live through.
I want her to have the real story.
And today, the real story is that I’m numb.
That’s probably the best word.
Yesterday I was overwhelmed with joy when Eliana was extubated.
Today, despite objectively having even more things for which I should be thankful, I don’t feel particularly joyful.
I’m not overwhelmingly sad either.
I’m just…numb.
And I’m learning that numbness apparently has a place in suffering too.
For the last several nights, I have intentionally tried to stay awake during a particular stretch:
2:00 a.m. to 4:00 a.m.
Those hours have become something to me.
Some of the worst things that have happened to Eliana happened during those hours.
Maybe my brain has learned to fear them.
But there’s something else about that time.
You’re alone with your thoughts.
Pain somehow feels louder in darkness.
Fear certainly does.
Because of these things, it seems inevitable that I must stay awake.
Last night, I didn’t feel much of anything.
But I stayed.
I prayed.
I sang quietly.
I read Scripture to her in a low voice, trying to make sure I didn’t wake her.
I think I mentioned that I’ve been immersed in the Psalms throughout this whole process.
Psalm 88 is one of those that has begun making more sense to me.
It’s one of the strangest Psalms because it doesn’t really have a positive resolution.
The darkness remains.
And yet the psalmist keeps addressing God.
He keeps praying from inside the darkness.
I’m pretty sure faithfulness isn’t always feeling God’s presence.
Sometimes it’s refusing to leave your post when you feel almost nothing at all.
Yesterday I wrote extensively about feelings not getting the final word.
I don’t actually have to feel something for truth to remain true.
Numbness isn’t evidence that I care less.
It’s evidence that I have loved, feared, hoped, grieved, prayed, and fought at max intensity for longer than my mind and body know how to sustain.
And perhaps faithfulness today simply looks like remaining here.
Sitting beside my daughter.
Holding her hand.
Praying when I can.
Letting other people pray when I can’t.
Trusting that the God who was present in my anguish is equally present in my numbness.
For example, here’s what happened earlier this morning.
As you all know, Mitch has organized these 12-hour prayer vigils, which so many of you have participated in.
While I was awake during those hours, I looked to see who was praying at that particular time.
It was Michelle.
Eliana was struggling with her airway. She had significant mucus and secretions, and we were working with the respiratory therapists trying to get her airway cleared.
So I texted Michelle and told her specifically what was happening and what we needed prayer for.
Later, she acknowledged my text and sent me the prayer she had prayed:
“Father, YOU are the air Eliana breathes. Fill her lungs with clean fresh healing air. Ease her pain and itchiness. Saturate that room with your presence and bring miraculous healing, peace, and rest. Sustain Emo and Shar in undeniable ways. Restore Eliana to complete fullness. In your mighty name, Amen.”
During that same span of time, working with the respiratory therapists, we were able to get Eliana’s airway cleared.
I know God isn’t transactional.
Prayer isn’t a vending machine where we insert the right words and demand a particular outcome.
God is sovereign.
But I also don’t want to become so sophisticated in my theology that I fail to recognize something beautiful when it’s happening right in front of me.
Mitch had organized people to pray throughout the night.
I happened to be awake during the hours I’ve increasingly felt compelled to stay awake.
Eliana had a very specific need.
I looked at the prayer schedule.
Michelle was there.
I told her exactly what our daughter needed.
She prayed specifically for the air Eliana breathes while we were working to clear the airway that air needed to travel through.
And during that window, it cleared.
God isn’t transactional.
But intercession is real.
There is something profoundly comforting about knowing that when a need arises at 2:30 in the morning, I can look up and know somebody has willingly taken that hour.
And when I tell them what our daughter needs, they pray.
I thought that was beautiful.
The people who came near
And that brings me to all of you.
Job’s friends eventually said plenty of things they shouldn’t have said.
Some would say they were a bunch of jackasses.
But before they tried explaining Job’s suffering, they did something profoundly right:
They came near.
They sat with him.
And some of my closest friends have done that for me.
They have spoken life into me.
Spoken truth when my own mind couldn’t access it.
Prayed beside me.
Cried beside me.
Sat beside me.
Suffered alongside me.
They haven’t fixed this.
They can’t.
But they have refused to let me suffer it alone.
And then there are hundreds of you doing the same thing from places I cannot see.
Different cities.
Different states.
Different parts of the world.
Different hours of the night.
Interceding for a seven-year-old girl many of you have never met.
I have experienced something throughout this that I can only describe as the lostness of my daughter, even though she isn’t lost.
She’s been lying inches away from me.
But unconscious.
Sedated.
Intubated.
Neurologically injured.
Hidden underneath machines and medications.
Present, yet inaccessible in ways that made me ache for someone who was still right in front of me.
And slowly:
She’s coming back into view.
Yesterday:
“Mom.”
“Dad.”
Not spoken.
Mouthed.
But understood.
Today:
Holding her head up.
Trying to wave to her brother.
These things are tiny.
And these things are everything.
So tonight, we continue.
There is still kidney failure.
There is still dialysis.
There is still brain injury.
There is still pancreatitis.
There is still respiratory work.
There is still blood-pressure support.
There is still sedation.
There is still withdrawal ahead.
There is still an extraordinarily long road.
But there are also fewer tubes.
More movement.
More recognition.
More autonomy.
More Eliana.
And tonight, whether I feel overwhelmed with praise or whether I feel absolutely nothing at all, the truth remains the truth.
Jesus is here.
So during those quiet hours:
I’ll stay.
I’ll pray.
I’ll read.
I’ll sing.
I’ll hold my daughter’s hand.
And when I don’t have enough left to pray myself, apparently there’s an army willing to take the next watch.
Please keep praying for our girl.
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