Updated: Jan 7, 2022
1200 milliliters a day
We left our first hospitalization after 7 long days with a list of new diagnoses, a NG tube, and a strict feeding plan, yet no answers to all the real questions.
Why was this happening? How did it happen?
How long has it been happening?
What is causing it?
Is my baby okay?
Being discharged from the hospital is still vivid in my mind, the feelings of it all, the crushing weight, overbearing pressure, and utter anxiety, but it’s also a haze. Those first few days home were a revolving “Groundhog’s Day” nightmare. There was little sleep, a lot of vomiting, a ton of replacing the NG tube, and an inordinate amount of crying both from Jude and myself.
We know it isn’t cancer
I spent my days and nights with the words of 5 different specialties ringing in my ears. “we can’t tell you what’s wrong ma‘am, but what we can tell you is..
it might be Williams Syndrome
it might be another genetic disorder
we know it isn’t cancer but his PTHrp is elevated which indicates cancer in adults but we aren’t sure what it means in his case
we know it isn’t cancer, but he has blast cells in his blood work