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Fight With Nathan

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Fight With Nathan

Follow our son’s journey and fight to survive his intestinal condition. Hello! My name is Nathan Riva and I was born on February 10, 2015. Love,
Nathan

When I was 23 days old, my dad and mom rushed me to the hospital because I had intense abdominal pain and I vomited a huge amount of milk. My skin turned yellower as the hours passed and my stool got darker until blood came out. I didn't know that I was already experiencing an acute intestinal malrotation and severe infection in the blood (sepsis). The good news is that the doctors were able to save my life! The bad news is that I went through 3 major surgeries within 2 weeks of confinement, leaving me with just 13cm of small intestines. Because of this, I am now suffering from extreme short bowel syndrome. I cannot absorb all the nutrients required for me to grow. But I am doing my best to fight and live on! I will wait until my intestines adapt and become mature to absorb more nutrients. Please continue to pray for my miraculous recovery. Thank you very much for helping me. I cannot wait to see you all when I grow bigger and I get better! May God bless you and your family a thousand fold!

06/25/2025

Passport renewal: DONE!! 🙌

After multiple attempts since October 2024, we finally got this done. Nathan’s health hurdles kept pushing the date back so this is huge sigh of relief especially with the expiration just 2 weeks away. Thank you, Lord God!

This brave boy powered through the blistering heat and humidity with a GJ tube (each with its own drain), a Gordon drain, a wound vac, and TPN with lipids - all while dealing with low endurance and pain from the drain suture site. (This photo was even taken before he was fully connected again to his 3.6L IV nutrition and lipid bags!)

Whew. That was a lot of driving back and forth between Chicago and Cincinnati and so much careful maneuvering with all his lines and equipment. But we got it done and even squeezed in a Jollibee lunch and a quick trip at The Bean.

Thank you, Lord God. These “happy problems” mean living our new normal at home and not in the hospital until it’s time once more for transplant.

Here’s to more family road trips and moments outside the hospital walls!

06/23/2025

Finally, Nathan is home after over 4 months!!
Team Riva is complete once more! ❤️

You made it, anak. Cancer-free and well, intestine-free. Never would I have imagined that someone can live without intestines, but by God’s grace, the gift of TPN and experienced medical teams, here you are home with us. And my, how good home looks on you my brave boy. We missed you terribly.

Praise You, O merciful and loving God. Salamat po, Panginoon.

06/14/2025

Update:

Phew. Quite the day we’ve had, barely 24 hrs in from arriving. We’re back from the OR, and praise God, the procedure went well with no sutures needed.

The dehiscence was about 10 cm long, and a wound vac was placed to help with healing. The main cause of the separation was ineffective drainage from the JP drain, which led to fluid buildup that ultimately broke through his midline incision since it was the path of least resistance.

Nathan is expected to have the wound vac in place for about 6–8 weeks. His JP accordion drain was replaced with a Gordon drain, repositioned for more effective suction. They pulled out about 500 mL of fluid - quite a substantial amount, especially considering a JP was already in place. This explains why we were having to change his midline dressing every 2 hours.

They also found a large fluid pocket near the base of the duodenum (first part of the intestines), which had been pressing up on his abdomen. His g-tube was switched to a gj tube for better drainage and decompression.

Lots of new drains and he is in pain, but all things considered, these changes were essential for his healing to move forward. We will just have to manage this temporary new normal until transplant.

His TPN was also adjusted to better support him nutritionally with albumin, vitamin K, and vitamin C being increased. If his liver markers don’t improve, we may need to switch from SMOFlipid to Omegaven, but for now we’re monitoring his labs.

Nathan, we are so proud of you. I know you feel tired and discouraged with yet another trip to the OR, but we hope and pray this is finally the turning point. You are so brave, my love. One day at a time. God’s got you.

****

URGENT PRAYER REQUEST

We arrived back at Cincinnati Children’s late yesterday afternoon and had a relatively stable night.

However, we’ve been dealing with his JP drains losing suction and the leakage from his still open midline wounds increasing.

This morning, the surgeon evaluated the site and confirmed dehiscence. Once again, his fascia separated. This is an immediate surgical intervention due to the high risk of infection. We will do a CT scan to confirm the extent of dehiscence.

I am so heartbroken, and truthfully this caught me completely offguard. Nathan is finally doing well. He is the most joyful I’ve seen in months. And now, we are suddenly back to antibiotics, procedures and pain. Please lift our brave warrior in prayer. The trauma we barely began to process from the past months is now being repeated.

I’m praying that:
- The CT scan reveals only minimal intervention is needed
- The surgeon assigned is experienced and steady, and that this time, the sutures hold for good
- The new drains can effectively remove the fluid buildup so that true healing can begin
- Nathan finds the strength to recover not just physically, but emotionally and mentally
- And for Archie and myself, that we find the grace and faith to endure this repeated heartbreak

It’s so hard to hold onto hope when complications come without warning. But we are still here. Still holding on. Please keep Nathan close in your prayers today. I am still grateful that we are closer to home. I hope our dream to take Nathan home and stay home comes true after recovering from this surgery.

06/13/2025

Home bound! Thank you, Nebraska!

Cincinnati, see you in a bit. 😭 Lord, maraming salamat po!!

06/11/2025

WE ARE GOING HOME ON FRIDAY!!

Huhuhu Lord… sobrang salamat po!
Archie and I were already talking of plans B, C and D.. but Lord God, you cleared the path.

To everyone who worked tirelessly behind the scenes to help overturn the decision after multiple denials and to all our incredible prayer warriors - THANK YOU from the depths of my heart.

It felt like the floodgates opened when I got the approval call for both air ambulance transport and hospital admission back to Cincinnati Children’s. I just cried and cried feeling completely overwhelmed with joy and gratitude. WE ARE GOING BACK HOME SOON, FOR REAL! 😭😭😭

Sharing a fun moment from the other night when Nathan learning what a CD and portable disc player are. 😂 The music therapist made him a custom CD filled with his favorite songs, and he’s been jamming ever since. 🎶

Music always lifts his spirit. And today, all our spirits are high and hopeful for better days ahead.

Lord Jesus, praise and glory to you. We are in awe of your timing and provision.

06/06/2025

6/6/25

A big smile today from our brave warrior!! How I missed this smile. What a gift to catch a glimpse of the Nathan I know and love so much. ❤️

Good news: We received insurance approval for air ambulance transport back to Cincinnati! Praise you, Lord God! What a huge burden lifted and such a concrete step towards coming home.

However, some unfortunate news as well: Inpatient admission to Cincinnati Children’s has been denied by insurance. Apparently this isn’t uncommon since they sometimes deem the request as “not medically necessary”. The next step here is a peer-to-peer review between our GI/Transplant attending physician back home and the insurance medical director. Since it’s Friday already, this will likely happen next week.

We are praying hard for an approval so Nathan can be fully evaluated by our home team after all he’s been through with chemo, severe rejection, explant and resulting complications.

Counting every single blessing and recognizing how God has been gently orchestrating each piece of this journey. May we have more faith as he continues to reveal his Holy Will to us.

We continue to pray:
- For effective pain management and for the JP drain to not dislodge any further
- For an alternative drain that can hold larger volumes so we’re not having to empty it every 2 hours around the clock until his next transplant
- That Nathan’s anxiety and trauma can be gently and appropriately supported
- For insurance to approve the inpatient admission at Cincinnati Children’s
- And ultimately, for a safe discharge from Nebraska and trip home for Team Riva.

Thanks again and again, prayer warriors. Blessings to everyone.

06/01/2025

Mental and physical health win for our dear warrior boy! He finally got to breathe in some fresh air and feel the sun on his skin after months of confinement in his hospital room! His motivation and energy have been so low over the past 3 months so it took some effort to get him out. But what a nourishing gift this was for his body and spirit.

We are also finally having real conversations about transferring back to Cincinnati. Just typing this makes me feel so blessed and grateful.

That said, we are facing some logistical challenges. If we are denied transport by insurance despite our appeal, we are left with the option of a commercial flight or applying for a charity-based medical flight. Please help us pray we can find a safe and supported way back home. With Archie needing to take the 11-hr drive to bring our car back home, it will just be Nathan and me navigating the 2-legged flights, and him handling the drive by himself with Lia and his mom.

Nathan still has an open midline and ostomy wounds, 2 JP drains that are causing him pain and a great deal of anxiety, and is fully dependent on TPN (IV nutrition) so will always be connected to his pumps and IV lines. His endurance is extremely low and will require wheelchair support as we travel 2 legs of the flight home. I’ll be packing the most minimal luggage and medical supplies to manage this by myself. 💪🏻

Even so, we recognize that these are “happy problems.” Because just yesterday, a sweet baby just a few doors down lost her battle. Her name was Alice, and the heaviness in the air since her passing is something only a hospital parent can understand. We bond in these hallways, we celebrate each other’s small wins, and we grieve deeply when one of our children earns their wings.

Please whisper a prayer for baby Alice and her wonderful, grieving parents. She was a fighter, and she endured more than most ever will. May she rest now in peace and light.

As I look ahead with cautious hope, I carry both the joy of planning for home and the sorrow for those who plan to do the same but for a different reason. What a humbling reminder to never take any moment for granted in this medical journey.

05/27/2025

Finally, some good news!

Nathan’s latest CT scan results were mostly reassuring. No evidence of a break at his midline incision and we’ve been able to reduce the frequency of wound packing for the ostomy site from every 2 hours to just 4x daily.

Nathan is now walking farther each day and we’re working more on endurance, standing taller and proper alignment of his shoulders. Praise You, Father God, for these much needed signs of progress.

Still not out of the woods with potential infection sources. He spikes fevers despite being on antibiotics and the drain outputs have been extra foul smelling. We will trial him off antibiotics tomorrow and see how his body responds.

Pain management remains a significant challenge, especially since oral meds are still off the table. His bilirubin continues to rise, and we’re concerned about the ongoing drop in hemoglobin and IGG levels. The fevers and other issues will keep him inpatient until we can get him to a more stable place.

We remain hopeful and continue to pray:
- That this storm has truly passed
- That we find ways to manage Nathan’s pain without IV medications
- For better drainage of the fluid constantly collecting in the abdomen
- For the continued closing of his wounds
- For full healing of his fascia and recovery of the liver
- And that soon, just maybe, we can start planning for a safe transfer back home

We are so grateful, Lord God, for these glimmers of light. Thank you too, our dear intercessors and prayer warriors.

05/25/2025

Siblings. They don’t get talked about enough in medical journeys like this. Not when the spotlight, out of necessity, shines so brightly on the child who is fighting to survive. But these siblings carry more than we often realize.

Lia has been with us through it all. At this point she knows how to take vitals, plays nurse with her brother, can name the basic medical equipment in the room, and chats with medical staff like she’s part of the team. Sadly, she now thinks the hospital is Nathan’s home that she occasionally visits.

This year alone, she gave up her last month of Kindergarten. She gave up her school birthday celebration where parents come and read her favorite book and talk about the birthday celebrant. We have been unable to volunteer in her class despite her requests because of Nathan’s medical emergencies. She gave up her dance recital that she’s practiced for several months. If you know Lia, you know she lives for the spotlight. She’s a born performer, so full of personality and confidence. But she let this all go without tantrums or resentment. When asked whether she wanted to go home to not miss school or the recital, she chose to stay and be with me and the family because she hates the feeling of being separated from me. 🥺

She cries when I leave for the hospital and why I can’t sleep beside her. Hearing her beg for 10 minutes, 5 minutes or an extra 1 minute to just hug and kiss her just cuts my momma heart deep.

We try our best to pour into her little heart, to carve out time just for her. She loves our simple 1:1 dates at the hospital cafeteria and gets extremely excited when it’s my turn to sleep with her.

She is so young yet so wise, logical and brave. Lia, my fierce, headstrong, brilliantly creative and radiant girl - please know how much we love and see you. You matter just as much. You are a blessing and you complete our family in ways only you could. I hope you grow up knowing you were never in the background. You are the glue and that bright light especially in our hardest days.

We love you so much!!

05/24/2025

5/24/25 11AM CST

There still seems to be no end in sight to the pain and complications our dearest boy is enduring. His fragile body has carried more suffering than I could fathom. The trauma, the endless procedures and medications, and the side effects we know will unfold in the years to come… we surrender all of it to You, Lord God.

We’ve now started a continuous narcotic drip to help dull Nathan’s constant pain. A CT scan was just done to check if there’s another fascia break at the midsection and to see if fluid is again collecting due to the JP drains possibly not effectively evacuating everything. We beg of you, dear Father, no more surgery. Only minor procedures if needed, to help relieve the pressure, to ease his pain, and address the fevers.

Nathan’s former ostomy site is now acting like a 3rd drain, but we’re unable to place a bag over it due to the deep, open midline wound. We’re back to changing gauzes every 2 hours and each time, Nathan’s anxiety spikes. You can see in his eyes just how exhausted he is from all this.

Lord, please help us endure. Every time we try to hold on to hope it feels like it’s crushed again. We need Your grace - a deep, sustaining grace - to remind us that this suffering is not without purpose, even when we don’t understand it. Strengthen Nathan. Strengthen us. Help us keep going.

Our Lady of Sorrows, hear our cries and those of your innocent child, Nathan. Blessed Mother, intercede for us.

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