{"id":94,"date":"2025-10-26T14:50:30","date_gmt":"2025-10-26T14:50:30","guid":{"rendered":"https:\/\/cota.org\/cotaforeliana\/?p=94"},"modified":"2025-10-26T14:50:30","modified_gmt":"2025-10-26T14:50:30","slug":"from-hospital-halls-to-wednesday-addams","status":"publish","type":"post","link":"https:\/\/cota.org\/cotaforeliana\/2025\/10\/26\/from-hospital-halls-to-wednesday-addams\/","title":{"rendered":"From Hospital Halls to Wednesday Addams"},"content":{"rendered":"\n

Eliana\u2019s Medical Update \u2014 October<\/strong><\/h3>\n\n\n\n

October has been a whirlwind behind the scenes. Over the last several weeks, Eliana\u2019s BUN levels have been trending high, and despite multiple tweaks to her peritoneal dialysis (PD) at home, we just couldn\u2019t get things under control. Her team decided it was time for a closer look \u2014 what we hoped would be a short inpatient stay to monitor things more closely. But when her numbers didn\u2019t improve, and actually worsened at times, it turned into a full two-week hospitalization.<\/p>\n\n\n\n

The goal:<\/strong> get her body clearing waste effectively again.<\/p>\n\n\n\n

On day one, things looked promising. Her labs responded well \u2014 a huge relief. But after that, her BUN crept back up again. Day after day, the team adjusted her PD prescription, hoping the right combination would click.<\/p>\n\n\n\n

At first, the doctors suspected nutrition was contributing \u2014 when the body isn\u2019t getting enough calories and protein, it can start breaking down muscle for fuel, which pushes BUN levels higher. So we tried all the calories and snacks we could to support her.<\/p>\n\n\n\n

But as the days passed with little progress, another hard conversation surfaced: hemodialysis.<\/p>\n\n\n\n

We always knew PD wouldn\u2019t last forever. Eventually, the peritoneum can scar and stop clearing well. And Eliana has done hemo before \u2014 briefly, after her transplant failed. It was extremely tough on her physically, and emotionally draining. Hemodialysis days can leave kids exhausted and nauseated \u2014 and for a child who needs energy and nutrition to grow toward a future transplant, that\u2019s a big challenge.<\/p>\n\n\n\n

This was the longest hospital stay she\u2019s had outside of surgeries, and it was an emotional rollercoaster for all of us. Through it all, my mom \u2014 \u201cDeedle\u201d \u2014 was our steady rock. Without hesitation, she made the long drive from Louisiana. She kept Eliana smiling, entertained Parker, and helped us breathe when we needed to. (We love you, Mom. \ud83d\udc9c)<\/p>\n\n\n\n

Toward the end of the stay, Eliana had a PET test \u2014 which measures how well her peritoneum clears waste and helps the team fine-tune her dialysis. With those results, we left the hospital with a new PD prescription and a renewed sense of hope that we weren\u2019t out of time yet.<\/p>\n\n\n\n

And then\u2026 labs three days later were stable. Maybe even a touch better. \ud83d\ude4c<\/p>\n\n\n\n

We allowed ourselves a deep breath. Not done \u2014 but hopeful. Clinging to the possibility of more time on PD, more time to grow stronger, more time before the next big leap.<\/p>\n\n\n\n

\n\n\n\n

So what\u2019s next?<\/strong><\/h3>\n\n\n\n

The next step is still transplant.<\/p>\n\n\n\n

PJ is currently in evaluation as a potential donor for the DISOT clinical trial at Stanford. If he qualifies, the earliest Eliana could receive the stem cell transplant would be April \u2014 followed by the kidney transplant no sooner than six months later.<\/p>\n\n\n\n

Like we\u2019ve been told: this is not for the faint of heart.<\/p>\n\n\n\n

It\u2019s not the transplant itself that\u2019s hardest \u2014 it\u2019s preparing her body to accept the stem cells. The protocol is intense. The year ahead will not be easy.<\/p>\n\n\n\n

But the potential outcome?
\u2728 A kidney free of FSGS
\u2728 No anti-rejection medications
\u2728 A life with less limitation and more childhood<\/p>\n\n\n\n

Thank you for every message, every prayer, and every kind thought you send our way. We feel them \u2014 and they help carry us.<\/p>\n\n\n\n

\n\n\n\n

A little lightness \u2014 because that\u2019s who she is<\/strong><\/h3>\n\n\n\n

She\u2019s going to be Wednesday Addams for Halloween \u2014 and she can slip into moody-teen glare faster than you can snap your fingers. \ud83d\ude02<\/p>\n\n\n\n

And when she walked through our front door after that long inpatient stretch, Cleo and Gemma nearly tackled her with love. Those pups are always her happiest welcoming committee.<\/p>\n\n\n\n

For now, we take things day by day \u2014 adjusting to her new PD cycles, balancing blood pressures, and holding our breath a bit every time labs come back.<\/p>\n\n\n\n

We\u2019re praying for good numbers on Thursday.
One day closer. One step stronger.
Always forward. \ud83d\udc9c<\/p>\n\n\n\n

<\/p>\n\n\n\n

\n
\"\"
Sunset view from the 12th floor<\/figcaption><\/figure>\n\n\n\n
\"\"
Sunset view from CHOA<\/figcaption><\/figure>\n\n\n\n
\"\"
Taylor Swift themed party at CHOA<\/figcaption><\/figure>\n\n\n\n
\"\"
Guest artist at the Seacrest Studios<\/figcaption><\/figure>\n\n\n\n
\"\"
The best little brother<\/figcaption><\/figure>\n\n\n\n
\"\"
Noah Cyrus visited CHOA<\/figcaption><\/figure>\n\n\n\n
\"\"
“in character”<\/figcaption><\/figure>\n\n\n\n
\"\"
Wednesday Addams caught smiling<\/figcaption><\/figure>\n<\/figure>\n\n\n\n

<\/p>\n","protected":false},"excerpt":{"rendered":"

Eliana\u2019s Medical Update \u2014 October October has been a whirlwind behind the scenes. Over the last several weeks, Eliana\u2019s BUN levels have been trending high, and despite multiple tweaks to her peritoneal dialysis (PD) at home, we just couldn\u2019t get things under control. Her team decided it was time for a closer look \u2014 what […]<\/p>\n","protected":false},"author":1174,"featured_media":96,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-94","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/cota.org\/cotaforeliana\/wp-json\/wp\/v2\/posts\/94","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cota.org\/cotaforeliana\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/cota.org\/cotaforeliana\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/cota.org\/cotaforeliana\/wp-json\/wp\/v2\/users\/1174"}],"replies":[{"embeddable":true,"href":"https:\/\/cota.org\/cotaforeliana\/wp-json\/wp\/v2\/comments?post=94"}],"version-history":[{"count":0,"href":"https:\/\/cota.org\/cotaforeliana\/wp-json\/wp\/v2\/posts\/94\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/cota.org\/cotaforeliana\/wp-json\/wp\/v2\/media\/96"}],"wp:attachment":[{"href":"https:\/\/cota.org\/cotaforeliana\/wp-json\/wp\/v2\/media?parent=94"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}