Cyclical

August 08, 2025

Friday last week, Sunny spent some time with her cousins! She was mostly allowing them to watch her sleep as she lay peacefully with her arm famously covering her eyes.

Saturday, we we hopeful that she'd be more awake and interactive, but were met with the nurse telling us that she was puking again. She had started at some point after midnight, and continued on into morning. We have learned to just quickly switch to IV fluids, and not bother with testing if she'd keep electrolytes down. Thankfully, the doctor and nurse practitioner that were on over the weekend had also been on the last time Sunny was like this. They were able to really experience the pattern and see all the tests come back inconclusive.
Additional tests were ordered and more doctors brought in for consult - a few gastroenterologists, some peeps from general surgery. I was grateful that the team was seeing that it was a pretty rhythmic pattern, and were trying to narrow down WHAT could be causing these issues every two(ish) weeks, BUT I diiiiiid give the general surgery team some attitude when they said they didn't think an MRI would be necessary & commented on how she's seemingly settled. "Well, we have to do something because this keeps happening every two weeks."

Sunny stayed on IV fluids over the weekend and into the week, and her heart rate gradually became more and more normal. She wasn't puking - she didn't really have much in her belly to puke up. Tuesday, Sunny went off for an MRCP(an MRI that focuses on the biliary and pancreatic ducts) and while the images were mostly unalarming, the doctor on this week said since her specialty is the heart, she wanted GI and Nephrology to aid in coming up with any additional ideas.
Fortunately/Unfortunately, the results showed nothing much. Most everything looked in order, no blockages or anything that was obviously in need of further investigation. She also got an ultrasound on her lower abdomen, another urine culture, labs on Thursday, as well as a PICC line and a tracheal scope. We lengthened her trach a smidge(officially upsizing from Neonatal to Pediatric! It had been kept smaller due to her stent placement - we don't need friction between the stent and trach:), and she's been started on IV nutrition.

Still without any clear leads, the team is discussing what next step to take; do we keep her off feeds, and see if it happens again at the two week mark? Do we experiment with continuous feeds and trade her g-tube for a GJ tube(skips the stomach and heads straight for the small intestines)? Should we try formula? Is it feeds? I jokingly asked if there were specialists that we haven't met with yet, maybe Sunny was just trying to hit every category before we leave.
I think I've done a good job at not googling things during our stay at the hospital, but I've been googling things with this. Even if I'm no where near the real culprit, my dream is to possibly can ask a question that sparks a thought from one of the doctors.

That's where we are currently - still trying to figure out next steps and still hoping to make our tentative discharge date at the end of the month.

I attempted some of my own investigation by searching "vomit" & "puke" in my text messages to see if there were other instances that sounded familiar, & there did seem to be a trend. I think it's just taken us a while to see the pattern and not attribute the vomiting to something else like a morphine wean, feed increase, UTI etc. But....google had nothing helpful when I searched, "what happens in your body every two weeks?" 😬🙃

Prayer request:
- For an answer to what is causing Sunny's terrible weekend ~every two weeks.

Thank you!

Love,
Chris, Alyssa & Sunny