In case you weren't aware: What happens during an EEG
I posted links to previous posts above, if you are reading this and saying. . . EEG followup? What brought that on? And wanted a convenient link to the "story".
It was an ill-omened start to our trip to see the pediatric neurologist. I got into a series of ongoing patience-related (or lack thereof) pissing contests with my wife. Maybe that's not an omen. Maybe that's just a shitty way to start a stressful day. Inauspicious start? Maybe that's the same thing. Anyway, probably I was stressed out because I'd set up the appointment but didn't really know where I was going, and just prior to departure, Leslie hopped on the computer to check work email, while I was hoping to go over our route to the office with her (we were driving seperately).
After the initial pissing contest ended (in a tie. . . we were both equally douchebags) it was agreed that "we don't need no goddamn directions because we can just plug in the address to our respective iPhones and go!" I put that in quotes, but she didn't actually say those exact words.
This led to another pissing contest when my wife took the lead and missed the turn her respective iPhone instructed her to take and required us to go a different route that her iPhone suggested as a backup. It ultimately led us to an unmarked building and she then relied on my memory of the office (I had no recollection of the office) to determine whether it was the right office, motioning me to pass her in the one-lane driveway so that I could "take the lead" and get us there. I thought we were at the right office, so I was thinking, (and this is a direct quote. . . at least in my brain) "Why the hell am I passing you? Park the van!"
Gestures were involved. I'm not talking about the finger gestures you probably think I'm talking about, but the kind of angry pantomime you do when someone just cut you off and you're waving your hands wildly to indicate "I am so angry" knowing full well the person in the car ahead of you can't understand anything you're trying to convey but is getting the "I am so angry" gist of it. Think of, "I once caught a fish thiiiiiiis big," only with more shaking involved, and you're definitely in the ballpark. We "talked" and I explained my side of the story. . . that I had no idea where we were.
It was fun. Doctor's appointments can be stressful. We're better now.
It was the right building. So that was awesome. And although we were about 5 minutes late, they were running about 35 minutes late, so win. . . um. . . win? One of the bonus side-effects that an ongoing pissing contest with your spouse can create is not being really upset that you can't sit together in the waiting room and one of you needs to walk the halls with your child in order to keep her content and lessen some of the stress. So I walked the halls with Lily, and we chatted and occasionally passed the windowed office in which Leslie waited, waving as we did so, and being alert to our "turn".
Leslie being the bigger man, apologized for taking her frustration out on me, and I apologized for dropping wordless eff bombs on her. It was probably not my best apology work though, to be honest.
I think my frustration stemmed from:
- Setting up every aspect of the appointment but not really having clear directions to it.
- Not having any recollection of the office visit we'd made there 2 years prior.
- Having to take Lily in to the appointment in the first place.
I think Leslie's frustration stemmed from:
- Me setting up the appointment but not getting clear directions to it.
- Me yelling at her while she was on the computer so we could talk about the directions.
- Having to take Lily in to the appointment in the first place.
Lily, for her part, did great. Entertained as she was by walking the halls, she suffered the weighing and measuring, the poking and prodding, and waiting in the examination room, with about as much grace as she has ever shown. She seemed content to play with Jingle (her story-time stuffed animal buddy) for the majority of it, and only squirmed and wriggled a bit when I had to hold her on my lap so the doctor could check her reflexes.
After taking my mood out on the nurse for asking questions whose answers were located in the documentation she held in her hand, if she'd only troubled herself to look, I settled down and the doctor joined us to discuss the EEG results. Normal. BUT! He recommended a "Prolonged Outpatient Video EEG" as a followup. Why? Because Lily had been moving around a lot during the standard EEG.
This elicited a spike of intense irritation that helplessness slowly washed away to dull anger. Though I knew it served no purpose beyond "getting it off my chest", I said, "I asked for an EEG that would allow Lily to move around. I explained that she was autistic and ADHD and that she'd move around a lot and I was told that was no problem; they see thousands of kids and many with similar issues." In fact I had told them that there was no way she would sit still nor tolerate being restrained and they'd poo-pooed it. Fuckers.
"Nineteen leads?" I asked.
"Something like that," the doctor replied, nodding.
I suppressed another flash of irritation before I could say, "Something like that? Or exactly that?" Because I'd been told the other reason the standard EEG was preferable to some other form of more mobile EEG was that the ambulatory EEG, for instance, only had four leads. . . four leads vs. nineteen leads meant much less data. But this doctor wasn't the doctor who told me that in the first place, so beating him up about it was useless.
He also recommended a cardiologist consult, because fainting, in his words, "comes from either the brain or the heart" and he wanted the cardiologist to be aware of her case if the EEG led nowhere.
There followed a lot of apocryphal information that had to then be sorted out later because the doctor had no idea what he was talking about, including the following:
- The spacious rooms at the hospital can accommodate both parents. No, they only allow one to stay.
- My nurse will set up the appointment and verify whether they can perform this procedure on the weekends. No, she can't do that, actually.
- My nurse will call the cardiologist to set up the consultation. No, actually she's similarly unwilling to do that.
Doctors don't possess a fantastic understanding of the logistics of medicine. They may be spectacular practitioners, but they all seem to feel that any of the shit that doesn't fall under their immediate supervision must necessarily roll downhill and their nurses will handle whatever comes their way. They don't know what their nurses actually know, but whatever it is we want. . . the nurse or administrative assistant will take care of it for us. Except they don't. And by that time the doctor is on to the next patient (who he also tells the nurse will take care of that) and there's no closure to the whole, "my staff will handle your every wish" loop. I didn't feel like fighting with the girl in front, so after getting phone numbers from her, we left.
Leslie took Lily for her Mc-Reward-ld's nuggets and fries and I drove back to the office, stopping at DiBella's to pick up a hot godfather sandwich on 'everything' bread with lettuce and tomatoes, NO onions, hot peppers, oil and provolone to go. Now I wreak of garlic and suppressed rage, but am safe from vampire attack.
The cardiologist is going to want to see Lily. I feel fairly certain of that. He'll weigh her and get her height, and maybe even her blood pressure, and then he'll have a talk with us about what, if anything, he wants to do. We'll both take a day off to do it, and fight Lily to sit down and not pee her pants and generally behave, just so we can have a conversation that could easily be done over the phone (if it weren't for that pesky height/weight requirement).
And at the end of the next EEG and the cardiology consult, I feel fairly certain everything will still come back normal. The most irritating thing about our "leave no stone unturned" attitude with regard to Lily is that regardless of specialty, whether it's neurology, genetics, cardiology, whatever. . . she's normal. Just a puzzle.
Yeah, no shit.
I wrote all this out probably better yesterday, then got some weird error. I copied it so I could log back into blogger and paste it, saving the blog contents. I logged back in and blogger had a draft copy saved. The draft didn't have everything on it that I had in my copied version, so I highlighted the text and hit paste. . . except that instead of hitting paste I hit copy again. . . and completely removed all ability to retrieve that copied information, since I essentially just copied over it with the draft.
I was too pissed off about that to fix it yesterday, and I'm still too irritated to go through the whole post and make it what it once was. . . but that's it in a nutshell.
That night our fancy pediatric autism specialist guy called me to discuss the results and said he thought the EEG result looked very good and that the data didn't show any signs of the movement that the neurologist had mentioned might be present in the results. He also said that although the tests were normal, he felt the fainting spell Lily experienced were cause enough to continue investigating and hoped we'd go ahead with the video EEG. I told he we were planning on it.
His staff is supposed to call me today to discuss setting up our next appointment.
I apologized to Leslie more adequately that night. Her day had continued to spiral into the depths of hell. . . it just was sort of a sucky day all around, with lots of waiting in line, being late for stuff, having technical trouble, etc. I offered her a martini, but she declined. I took Emma to baton and let her share the rest of her evening with Lily.
The day ended better than it began.