06/09/2026
LONG UPDATE because somehow an entire lifetime has happened since my last Cincinnati post… ❤️🩹
The last time I really updated everyone, I was leaving Cincinnati after completing my antroduodenal manometry testing and getting my first IB-Stim placed. At the time, we were headed home exhausted but hopeful. We were waiting for results, praying that the testing would finally give us answers, and had absolutely no idea what the next several weeks were about to look like.
So, here’s the update from where I left off…
We came home from Cincinnati and were only home for about a week before it was time to head right back for my follow-up appointment and next IB-Stim placement.
And, because apparently nothing in my life can ever happen simply, the night before we were supposed to leave, the balloon on my J-tube seemed to literally explode.
We went to the Peds ED, and because we were supposed to be flying to Cincinnati, they placed a catheter into the J-tube tract after many hours of trying to just try to keep the hole open until we could get there.
That worked great… until it didn’t.
While we were traveling, the catheter FELL OUT in the Atlanta airport bathroom.
Yes. The Atlanta airport bathroom. 😭🤢
We were trying to get to Cincinnati with a feeding tube tract that we were desperately trying to keep from closing, bile leaking everywhere, and absolutely no idea what was going to happen next. Once we finally made it to Cincinnati, we went straight to the ER.
That ED visit turned into another admission.
I ended up staying in Cincinnati for about a week and a half. During that admission, we ultimately made the decision to remove the J-tube completely and let that tract close. Instead of continuing to fight with a tube that had caused problem after problem, we attempted to move forward using my G-tube and doing gastric feeds.
Eventually, I was discharged.
We were hopeful—again—that maybe we had finally found something that could work.
Then, literally the very next day, everything changed again.
I had a run of ventricular tachycardia (V-tach), passed out, fell and hit my head. When I woke up, I was confused and didn’t know where I was.
On top of the cardiac episode and passing out, I also wasn’t tolerating my feeds.
So… right back to the hospital we went.
I was readmitted, and during that admission it became pretty obvious that relying on gastric feeds alone wasn’t going to be the answer we had hoped it would be. Ultimately, I had a GJ tube placed, allowing us to bypass my stomach for feeds again.
And, for once, we actually got some GOOD news.
I GOT TO GOAL FEEDS!!
After months of fighting my body over nutrition, tubes, vomiting, pain, nausea, feeds being stopped and restarted, and constantly wondering what the next step would be, reaching goal feeds through my GJ felt HUGE.
About a week later, we headed back to Cincinnati AGAIN for my final IB-Stim placement. Thankfully, that trip was much less eventful. The placement went well, and I also got to meet with my outpatient dietitian so we could continue working on my nutrition plan.
We came home from Cincinnati, and on the same day I got home, I already had several appointments scheduled at Children’s.
After those appointments, we ended up having to go to the Peds ED. Imaging showed a hemorrhagic ovarian cyst.
Thankfully, I eventually got to go home.
I wish I could say that was where the craziness ended.
Two days later, I was right back in the ED.
And that ED visit turned into a 20-DAY HOSPITAL ADMISSION.
Twenty days.
During that admission, what started as one problem seemed to turn into one thing after another.
One of the biggest and scariest changes was neurological. I lost almost all sensation in my legs, especially from my knees down. I can’t feel light, touch ,or vibration in my feet and up to my shins, although I can still feel pinprick in certain areas. I also have weakness in both legs, but it is worse in the right.
Because I was having these symptoms along with bladder issues, Neurology became involved and we had to start figuring out whether there was something going on with my spinal cord or nervous system.
I had an MRI of my lumbar spine. Thankfully, it didn’t show a mass, spinal cord abnormality, or another major structural explanation for what was happening. There were only very minimal disc bulges from L2-L3, L3-L4, and L4-L5, but the MRI was considered essentially normal/physiologic.
That was obviously reassuring because it ruled out some really scary possibilities—but it also left us with another question:
Why couldn’t I feel my feet?
With the weakness and loss of sensation, physical therapy became a part of basically every day of this admission. PT worked with me daily on getting up, walking, strength, balance, mobility, and learning how to safely work with what my body was able to do that day.
And I have to give the BIGGEST shoutout to Mrs. Kara, my PT, because she was truly the BEST. ❤️
She pushed me when I needed to be pushed, encouraged me when I was frustrated and felt like I wasn’t making any progress, celebrated the little victories with me, calmed me down when I would get dizzy and start having a panic attack, and somehow made PT something I could look forward to even on days when I was exhausted and completely over being in the hospital. When your body suddenly stops doing things that used to happen without a second thought, having someone beside you who believes you can keep working toward getting those things back means more than I can explain.
I still have a lot of work ahead of me, though. Because of the severity of the weakness and my inability to walk more than about 5-10 feet without passing/blacking out, I have to use a walker and wheelchair to get around which is very hard since I’m a very independent person.
Now that I’m home, I’ll be starting outpatient physical therapy at the very least, and there is also a possibility that I’ll be doing outpatient occupational therapy depending on what my team decides I need. Leaving the hospital doesn’t mean the work stops—it just means I get to continue doing it from HOME. ❤️🩹
Then, as if the neurological symptoms weren’t enough, my vision decided to join the party.
I developed blurry/decreased vision in my right eye.
Ophthalmology came to evaluate me. My actual eye structures looked reassuring, but there were abnormalities on the vision testing that they couldn’t explain based on the eye exam alone. Because of that, they recommended Neurology continue investigating possible causes behind the eye or involving the central nervous system, including additional imaging.
And somewhere in the middle of ALL of this, I also developed symptoms concerning for a UTI.
My urine testing showed abnormalities, a culture was sent, and I was started on antibiotics. So while we were already dealing with nutrition, neurological symptoms, vision changes, bladder issues, and everything else, we got to throw a UTI into the mix too. 🙃
Needless to say, those 20 days were A LOT.
And all of this was happening while we were still trying to manage my GI symptoms and nutrition.
We finally received the results from the antroduodenal manometry I had gone to Cincinnati for in the first place. Surprisingly, the manometry was normal. Well, normal-ish. They said while my muscles work like they’re supposed to, that doesn’t mean that the food will go one way or the other, and they can’t test for my sensory symptoms, aka nausea, vomiting, pain, etc.
Based on the testing, Cincinnati felt that my current vomiting pattern was more consistent with rumination syndrome.
That diagnosis doesn’t mean the vomiting isn’t real or that I’m choosing to do it. My vomiting was literally witnessed during my testing in Cincinnati and documented by the nurses. At my worst, I have vomited more than 50 times in a day with eating or tube feeds and have struggled to even keep medications down.
A normal test also doesn’t automatically equal a normal life.
That’s probably one of the biggest things chronic illness has taught me.
Sometimes you pray for a test to be normal, and when it is, you’re incredibly thankful—but you’re also left wondering what explains the symptoms you’re still living with every single day.
Over these past several weeks, I’ve gone from Cincinnati to home, back to Cincinnati, from a J-tube to no J-tube, from gastric feeds to not tolerating them, through a V-tach episode and passing out, another admission, 3 new GJ tubes, FINALLY reaching goal feeds, another Cincinnati trip, an ovarian cyst, another ER visit, a 20-day admission, new neurological symptoms, numb legs and feet, bladder issues, unexplained vision changes, a UTI, daily PT, more imaging, more specialists, more medications, more testing, and more questions.
And yesterday, after 20 days in the hospital, I FINALLY CAME HOME. 🥹❤️
Putting on my own clothes, getting out of that hospital room, and knowing I was actually going HOME was a feeling I can’t even explain.
I’m exhausted.
My body is exhausted.
My family is exhausted.
And there are still so many things we don’t completely understand or have answers for yet.
But I’m home.
And right now, that is enough to celebrate.
Through all of this, I’ve also still had school hanging over my head. There’s a completely different kind of defeated feeling that comes from being in a hospital fighting through everything physically while simultaneously looking at schoolwork piling up and feeling like you’re failing because you can’t keep up with life outside those four hospital walls.
But I’m learning that sometimes doing your best looks different.
Sometimes my best is completing an assignment. Sometimes my best is getting out of bed. Sometimes my best is tolerating my feeds. Sometimes my best is taking another step with PT when my legs don’t want to cooperate. Sometimes my best is getting through another test, another MRI, another procedure, another IV, another night in the hospital, or another day without answers.
And all of those still count.
I don’t know what comes next.
There are still appointments to attend, symptoms to figure out, and questions that need answers. We’re still working on nutrition, still figuring out the neurological and vision symptoms, and now adding outpatient PT—and possibly OT—to the schedule as we work on getting me stronger and more independent again.
But I know one thing for certain:
God has not left me for a single second of it.
Not in the Atlanta airport when my tube fell out. Not in Cincinnati. Not when I woke up after passing out and didn’t know where I was. Not when another admission appeared on the horizon. Not when I couldn’t feel my feet. Not when my vision changed. Not during PT when something that once would’ve been easy suddenly became something I had to fight to do. Not during those long hospital nights when I would’ve given anything just to sleep in my own bed. Not during the moments when I wondered how much more my body—and my heart—could handle.
He was there.
This journey has taught me that faith doesn’t mean understanding why everything happens. Sometimes faith is simply trusting that God is still writing the story when the page you’re currently living makes absolutely no sense.
Yesterday, that story finally brought me HOME. ❤️
For everyone who has prayed, texted, called, visited, checked on my family, encouraged me, advocated for me, made me laugh from a hospital bed, or simply reminded me that I wasn’t walking through this alone—thank you.
And to the doctors, nurses, therapists, and everyone else who listened, believed me, advocated for me, pushed me, encouraged me, and treated me like a person instead of just another complicated medical case, thank you will never be enough.
And Mrs. Kara, thank you for being the BEST PT and for being such a bright spot during 20 really long days. I’m going to miss having you there every day, but I promise I’ll keep putting in the work outpatient! ❤️
This definitely isn’t the update I thought I’d be giving when I left Cincinnati after that first round of testing.
We still don’t have every answer.
We still have a long road ahead.
But after everything these last several weeks have held…
I’M HOME. ❤️🩹
And tonight I’m thanking God for my own bed, my own clothes, my family, and another chance to keep moving forward.
One day, one appointment, one test, one feed, one PT session, and one prayer at a time. 🤍🙏🏼
Thank y’all for continuing to love me through every chapter of this crazy story. I’ll keep everyone updated as we figure out what comes next. ❤️
Next up: Cardiology Appts on Thursday!
