My daughter’s update…

It’s been a while (about a month to be exact) and we are nearly back at square one. After going into the hospital soon after my last post for emergency surgery, we learned that my daughter does not have a celiac artery! It’s a rare anatomical variation—0.1% to 2.6% to be exact—and she is one of that very small percentage. While this does not affect her health at all, for this instance it means that her celiac artery is not compressed since it does not exist. While this was very confusing to me, her surgeon assured me that it was not a mistake and that he followed her 3 other arteries that branch off of the abdominal aorta to their exact location. He confirmed that they do not branch out from the celiac artery, instead they branch out directly from her abdominal aorta.

Almost Back at Square One

So while we are not at square one, we are nearly back there. We have eliminated all gastric issues. We know she does not have a celiac artery. But that is all. Her surgeon called a neurologist right from her room at the hospital, and she got an appointment with one soon after. So far my daughter has undergone an MRI of her brain, which has come back normal, thankfully. She had to do a 24 hour urine analysis for porphyria, which unfortunately the lab has lost and she will have to redo. Just my luck, right? She also has an EEG scheduled for the middle of February (!!!), but she has never had any sign of a seizure in the past, so I doubt this will be conclusive of anything. I’m so lost, confused, upset, aggravated, and whatever adjective comes to mind that has a negative connotation. The only thing that gets me through these days is knowing that absolutely nothing, no test, has come up positive for disease/illness and she is still considered a healthy teen. It’s just heartbreaking to see her in pain all the time…