Yesterday’s tests, an endoscopy, sigmoid colonoscopy, and an MRI, return all negative results. This is great! Or is it? So we still did not have a clear answer or diagnosis to her vomiting. Nonetheless, passing these tests allow us to start a medication, cyproheptadine, which essentially puts a hard-stop to the vomiting at a neurological level.
So last night, for the first night in nearly 3 weeks, we were vomit-free, retch-free. While we are all absolutely ecstatic that she has some relief, it’s not completely satisfying since we don’t have a good diagnosis. There is a disorder, cyclic vomiting syndrome, which is a type of migraine that presents with Jennah’s symptoms, but the criteria for diagnosis do not precisely match. The doctors also seem to be stumped, although the GI doctor still has some options he wants to consider. I ran into Jennah’s hospitalist (her primary inpatient dr.) in the elevator as we were on our way to get the PICC. I was very excited to tell her that she didn’t vomit last night and said, “maybe we’ll be out by the weekend!” She gave me the weirdest response, which I’m pretty sure meant, “don’t bet on it.” Boo.
Not sure what the plan is with this medication, but we want to get her to start eating again. That’s our ticket out of here at this point. It’s going to take days to ramp her back up to her 32 oz/day feedings. I imagine they’d let us go if she starts getting comfortable with about half that amount. Maybe. As I type this, Jennah is under general anesthesia getting a Peripherally Inserted Central Catheter (PICC) for her fluids, nutrition, and any meds offered in an IV form. It’s inserted just above the elbow and leads through the subclavian stopping just before the heart. It will be a relief to no longer have IVs. She’s had 4 IVs in the past 10 days (not counting the one at urgent care 2 days before our stay here!) and her veins are bruised and swollen from the large molecules of the parenteral nutrition solution.
Plans for today:
- get a PICC
- wash hair, sponge bath – haven’t been able to do this for the past 10 days due to the constant retching and puking!!
- start taking small amounts of Pedialyte through the g-tube.