11/30/2025
Phew.
The last day and a half have been rough.
Friday morning Juliet started puking which catapulted a whole whirlwind of a sickness spiral.
All errands, to-do lists, and plans stop to a screeching hault as we not only tend to a sick toddler- we call nursing lines to her Complex Care Clinic for assistance managing her care to avoid another ER trip or her 14th LifeFlight.
Vomiting, intermittent fever, high heartrate (even while sleeping!) and fatigue were her primary symptoms.
Her medical team is phenomenal and helped walk us through changing up her feed rate/dose to try to keep her hydrated.
It’s a fine line between giving her enough but not too much or too fast to make sure she keeps it down.
We finally discovered that having a really slow rate AND doing 50% g tube feed & 50% Pedialyte with a smaller total volume was what she needed to keep it down.
To keep it PG on here, the most current theory is that she is SEVERELY constipated so we got medicine & a clear regime to help her out.
When she is this sick, meeting her daily hydration goal takes precedence and her caloric goal is out the window. We can recover her calories after the illness but if we don’t make sure she’s hydrated it will lead to much larger problems, including her ability to get better.
Today she is acting more like herself and hasn’t slept most of the day like yesterday. She also has been able to keep down her modified feeds & Pedialyte which is a great sign!
Hopefully we continue to be on the recovery end of this illness!
🩵🐞🩵
