We made the trek to Shands from Monday to Wednesday. She had all of the routine labs drawn, and they hooked up her "skull cap" (the EEG wires on her head). This time around, I could tell she was REALLY irritated by the wires. I have no doubt they left her head feeling itchy all day and night.
As usual, she performed well for the cameras.
We also managed to get a consult arranged with the GI doc. I have been very concerned about the amount of gagging and vomiting she has been doing with each seizure. One of my greatest fears is her aspirating and it developing into pneumonia. We discussed everything under the sun and decided we should begin testing to rule out any major GI issues. I think the first test will be an upper GI (to look for obstructions). If that test is normal, then they move on to a motility study. Depending on those results, we may try the antibiotic erythromycin (to help facilitate digestion), or move on to another test. We need to rule out any potential obstructions and make sure her Nissen is still intact. She seems to be refluxing more and it's either the diet getting to her or something else. Whatever the case, IT'S STRESSING ME OUT!!! Today, she had another gagging/vomiting episode. To rule out g-tube issues, I changed her current, fairly new AMT mini-button, to the Mic-Key g-tube she used in the past. We'll see if that produces any positive results. The only thing I can really say for certain is that it seems the tube is getting blocked internally by mucous, which in turn causes the vomiting and gagging. It does not, however, explain the extra seizure activity. :( She takes Zyrtec daily for possible allergies, so I can't say for sure if that is the cause. It is probably more likely the high amounts of oil she is provided with at each meal.
I'm definitely not in any rush to go back up there, but I am a bit irritated with the GI clinic for not calling with the scheduled tests. Whenever we go, cross your fingers and toes we figure something out!