Maria went into the PEMU this morning for what we hold will be a short stay. They wired her up to an EEG and Cathy has a button she’s supposed to press any time Maria does something seizure-like. That includes her gagging thing, staring off into space, and this head movement the nurse noticed. Those of you who know Maria know she often turns her head to the side. To us this is clearly not a seizure but more of a cerebral-palsy-like “I can’t control my movements” thing. However, the point to pressing the button is it just makes a mark on the EEG so the neurologist can correlate brain activity to outside stimuli and see what is going on.
They are, of course, all concerned about her gagging. She hasn’t been doing it mostly because she’s been asleep since she got there. However, the pulmonologist is concerned about Maria’s “history of aspiration”. Um, history? Twice over a three year period qualifies as a “history of aspiration”? He’s talking about putting the NG tube back in and Cathy’s pretty much thinking, “Um, no.” Maria is two years older than the last time she had it. She wouldn’t tolerate it going in and she sure as heck wouldn’t keep it in. Not to mention the last time she had it she was only getting milk not food. We aren’t saying we wouldn’t do it, but they have to convince us it would be the right move.
They all have their theories about the gagging: reflux, aspiration, seizures. Cathy keeps explaining over and over that the pattern doesn’t fit these things. There is no pattern around eating, positioning, time of day, activity, fatigue, or anything else. They don’t listen and treat her like some mother in denial. It’s the whole “I’ve known her for 30 seconds but I’m more qualified to judge her behavior than people who have known her for three years because I’M A DOCTOR (fanfare plays).”
They are talking about putting Maria on Prilosec or Prevacid, which would at least be more reasonable than a tube. They also mentioned some test that can tell if she’s been getting food into her lungs. We have no idea if she’s getting out tomorrow of if they are going to keep her for a while. I’ll keep you posted.