^{Support Registry Update}

3 Sep | Eliana Update

In support of
Eliana Rivera

As some of you may have already heard from the previous post, last night was pretty brutal and hellish. Over the past couple nights, Eliana has continuously vomited and has really struggled to tolerate her feeds. We just finished rounds with the doctors, so here is where things stand.

Starting with her kidneys, she is urinating very well. Praise God for that. Her filtration, however, is still lagging behind the return of her urine production. Her BUN and creatinine increased again, so they are watching those closely. Right now, they do not believe she needs another dialysis treatment and still believe she is progressing appropriately from a kidney recovery standpoint. Ultimately, we need to see her BUN and creatinine stabilize and begin coming down between dialysis treatments. That would demonstrate that her kidneys are increasingly taking filtration back for themselves. Please continue praying specifically for that.

They are also not particularly concerned about her LDH right now when looking at everything in totality. Most importantly, they are not seeing evidence that HUS has reactivated. Praise God. We want to continue praying fervently that HUS is finished and that there are no further complications from it.

The two biggest things weighing on us right now are her swallow study and her feeds.

Her swallow study is in less than an hour. To be very frank, the medical team is not expecting tremendous success. She has not yet demonstrated good swallowing function, and even with small amounts of ice, she is aspirating. We have to do the study regardless because we need to understand exactly what is functioning, what is not, and where she is in the recovery process.

If she cannot safely swallow, she will continue needing a feeding tube and could ultimately go home with one. We are obviously not excited about that possibility. Success today can look a lot of different ways, but we are pleading with God for some success. We are praying for restoration of her swallowing mechanism, her vocal cords and her voice. We are asking God to surprise us today.

Her feeds are the other major issue. Because most of the vomiting has occurred during the evening, overnight and early morning, they are going to try condensing her feeds so that less feeding happens during those hours. They are also giving her IV fluids to keep her hydrated and her electrolytes stable while they work through this.

Please pray that her body begins accepting these feeds. She desperately needs the nutrition to heal, rebuild and restore everything she has lost. And beyond the medical necessity, vomiting like this is simply miserable for her. She is depleted, fatigued, in pain when she vomits and unable to rest. With her swallowing dysfunction, vomiting also carries the additional concern of aspiration, particularly overnight.

There is another part of this that Shar and I need prayer for.

Yesterday I had to be replaced by Shar overnight because I was completely depleted and had barely slept. She took the night so I could rest, and now she is depleted and I am back here. We just keep trading places, trying to make sure one of us has enough left to be fully present with Eliana.

And this cycle does not feel sustainable.

Being here requires more than simply sitting beside her. We need to be awake, cognizant and discerning. We need to advocate for her, collaborate with her medical team, ask good questions, process an enormous amount of information and have the wisdom to make decisions when necessary. And then there are three boys at home who still need their mom and dad.

When your daughter is this sick, it becomes all consuming. There is almost no capacity or margin left for anything else. But our boys cannot simply receive whatever is left over. They need us too.

So we are trying to have the courage to do what God has called us to do as parents irrespective of how we feel or how depleted we are. And many times right now, we feel weak. We feel inadequate. We feel like we are not doing particularly well at any of it.

We are not looking for reassurance that we actually are. We are asking for prayer. For wisdom. For clarity. For courage. For steadfastness. For resilience. For perseverance. And ultimately, for God to give us what we simply do not have within ourselves.

So those are the things most heavily on our minds right now.

We are pleading with God. We are asking Him to be in this place and to work even when we cannot see Him and even when we cannot feel Him. We are asking Him to continue healing her body and to continue surprising us.

He is not surprised by any of this.

I can plead with Him. I can be angry and frustrated with Him. And at the exact same time, He is all I need.

He is good.

He is the healer.

He is the Creator.

He is the King.

So we are pleading with Him to continue intervening in this little girl’s life. To bring full healing to her body. To restore what has been damaged.

And to bring our girl back home healed and safe.

Emilio Rivera
7 days ago

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Comments

Anne-Marie Wurzel 7 days ago

We are praying so hard for your family. I know God hears us because he’s healed Eliana in so many ways. I am continuing to pray that he heals her organs and her systems. That she’s able to tolerate nutrition and ultimately that she can go home with you guys and be with her brothers again very very soon.

Heather Lee 7 days ago

I can’t even imagine how exhausted you both must be! Praying for God to sustain you both, your boys, and Eliana.

Lucinda Vleet 7 days ago

Continuing to pray for you all.

Michelle Thompson 7 days ago

Continuing our prayers for all of you.

Trevor Steffensen 7 days ago

Praying for Eliana everyday.

Amy McNan 7 days ago

Praying God sustains every member of your family. Praying all requests lifted above. Praying when I wake up at night and throughout the day. Lord, please heal Eliana. Please provide relief for her parents and brothers.

Unc Lammers 7 days ago

Heavenly Father, O YAHUWAH, keeper of covenant to thousand generations Deut 7:9, mighty Rock and refuge Ps 62:7, doer of wonders Ps 77:14, help and deliverer to poor and needy Ps 70:5 — We thank You Eliana urinates well — Praise. We ask BUN and creatinine stabilize and come down between dialysis — let kidneys take filtration back — no more dialysis needed. We praise You HUS not reactivated — LDH not concerning in totality — let HUS be finished, no further complications — no new clots, no new hemolysis. For swallow study in less than hour — we ask surprise — restore swallow mechanism, vocal cords, voice — let her swallow safely — if not today, show exactly what needs healing and path to restoration — protect lungs from aspiration — especially overnight vomiting. For feeds — let body accept feeds — stop evening vomiting — let nutrition heal, rebuild, restore what lost — relieve misery, pain, fatigue — let her rest. For Shar and dad — depleted trading places — give what they do not have — wisdom, clarity, courage, steadfastness, resilience, perseverance — let them be awake, cognizant, discerning advocates — and give margin for three boys at home — they need mom and dad too — give courage to do what You called as parents irrespective of feeling weak — You are not surprised by any of this — You are good, healer, Creator, King — continue intervening — bring full healing — restore what damaged — bring Eliana home healed and safe. In name of Yahusha, YAHUWshua, grace be with you always. Amein.

Amanda Blake 7 days ago

Our family is praying for you Riveras. The Blakes

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