4. American Health "Care" Strikes Again

I try to reschedule my 5-day continuous EEG. Again. And again and...

So where in the world have I been, and why the heck have I had no posts in over a month? I’ve been recovering from this:

I had really hoped there wouldn’t be a Part 4 to this series before we finally get to the 5-day EEG itself.

Hahahahahahahahah.

I really am cute sometimes. If you missed the first three segments of this adventure, they start here:

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April 29 - One week before the rescheduled EEG

There is nothing in the portal about my upcoming in-hospital 5-day continuous EEG with video monitoring. I can still find the original scheduling back in February, because the snowstorm prevented me from following through on it. The first attempt to get it authorized as an in-home test is in there too, also not acted upon because Medicaid denied it.

But there’s not a peep about my upcoming test that—back in February, after many shenanigans and frustrations—was supposedly scheduled for May 6.

This is extremely concerning.

So I call EEG Lab. Lo and behold! They have me on the schedule. Whew!

(We’ll laugh about this little miracle sometime later. The only reason they still have me scheduled? Because this lab is still using that “outdated” technology called a literal calendar. Like…on the wall. As in…handwritten on *gasp!* paper!)

I ask EEG Guy why this test is not showing up in my portal so I can do early check-in, as well as get the address and arrival time, and so I can take a screenshot of that all-important “your estimated cost for this procedure is $0.00” message that confirms, without a doubt, that this thing SHOULD be covered by Medicaid.

You remember that fiasco, right? Getting this confirmation was the main reason why it took three posts, not one, to tell you about the first leg of this adventure.

EEG Guy scratches his head because, with only a week to go, this procedure really should be showing in my portal.

In a miraculous feat of kindness, he offers to make the phone call over to Neuro Floor for me.

I—

Whoa. Wait a—

The Dain Bramaged One is not expected to do all the leg work of playing phonecall whack-a-mole herself. I praise his name and gladly wait for him to call me back.

He does.

Shocking, I know. But not really, because this is EEG Lab, and they have always been super on-the-ball with this whole thing.

Ball-droppers, however, have struck again. Let’s revisit the last time we dealt with the issue of rescheduling this test after the snowstorm, because it was all right there in Part 3 of this series:

DATE: FEBRUARY 12 - day of snowstorm and cancelled EGG

I’m informed that the test will be rescheduled. I watch for it in my portal. Nada. I wait for a phone call. Zilch.

FEBRUARY 19

I ping Neuro Portal to ask if I’m still supposed to be waiting for them to reschedule or what? They tell me to call EEG. I do and…

FEBRUARY 20

From: Chipper Chirper Cheerfully Chipping Away
To: Neuro Portal
2: 41 p.m.

Hi there! Me again. I called EEG yesterday. They said I had to call Neurology to reschedule. They were closed so I called today. They sent me to Sleep Lab who assured me I needed to schedule through your office. I assured them you guys had sent me to them—for the past 3 weeks for this rescheduling and for the fiasco trying to find out if Medicaid will pay for this. (Which I’m still trying to find out, after going rounds with half the hospital staff, billing, pre-cert, patient relations, multiple Medicaid offices, and now DHS.) Hahaha!

So Sleep Lab told me to send you a portal msg and then just sent me back to EEG. I just left them another message. Since nobody will reschedule this for me, are you guys able to call them and find out why? Thx!

2:43 p.m.

My neurologist’s office calls me to say that they’ve rescheduled the EEG!!!

—PHASE 1: Ecstasy!!!! Leaping for joy! Woot! Triumph on one friggin’ front!

—PHASE 2: Chill. Breathe. Relax. Celebratory food.

—PHASE 3: Wait a second… TWO MINUTES? From the time I sent that portal message to the time when you informed me that the EEG was rescheduled and gave me the new date, it took you

TWO MINUTES?!?!?!

—PHASE 4: *sucking my teeth* Mmmmm-hmm. I see.

Yeahhhh…remember all that?

I sure do. Because after all the shenaniganry that I watched happen in my neurologist’s office at my introductory appointment back in December when I watched the assistants try to schedule a mere 2-hour EEG…and after the continuous Monkey Girl cymbal-clanging and infuriating head-banging I underwent myself to get the February test scheduled in the first place…then to receive the reply that it had been rescheduled TWO MINUTES after making the request for them to do this themselves?

TWO MINUTES…

Two minutes…

Two minutes…

My hackles pinged that day. Something told me that was way too easy and too good to be true. In my guts I thought, “Mmm-hm. I’ll believe that it’s rescheduled when I’m doing the advance check-in on the portal, or I’m standing at the desk in the hospital and they’re smiling at me, admitting me.”

It’s really a good thing that I listen to my gut instincts like this, because I was exactly right. The ball had completely gotten dropped somewhere between EEG Lab, Neurology (who are located in various clinics around town), and Neuro Floor of the hospital itself. As it turns out…

Drumroll…

🤨 NO. 🤨
THE HOSPITAL HAS NOT SCHEDULED ME
FOR THIS PROCEDURE AT ALL.

Good news: EEG Guy informs me that he got the ball rolling again, and that now I will have a bed waiting for me.

Groovy.

Hospital beds are slightly useful during 5-day hospital stays. I thank him profusely and hang up.

My plan: I shall give them until the next day for it to hit my portal before I start poking bears again.

In the meanwhile, I go back to banging away at my bi-annual reapplication with DHS, which I have to submit in three days. (Because why would all this stuff not overlap? I think it’s a general coordinated law.)

I console myself with the convenient fact that this mountain of paperwork will melt my brains. Perfect for being hooked up to electrodes so we can find out if all my neurological glitching during projects like this is electrical—in other words, epilepsy—or not.

(We really pray that it’s not.)

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May 1 - Tuesday - 6 days before the EEG

After working on DHS paperwork all day, I realize that there is still zilch about this upcoming massive in-hospital test in my portal.

From: Squeaky McSqueak Toy
To: Neuro Portal
7:40 p.m.

Hi there! I spoke to EEG Lab on Monday and they said they have me on the schedule for my five day EEG on May 6, but that nobody else did. They said they took care of this issue with your office and Neuro Floor, but I still have nothing in the portal for check in, insurance/cost estimate, address and time, etc. Is there still something I need to do on my end to get this started? Thanks!

PS Will I be in a room of my own? With someone else? In a room full of beds?

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May 2 - Wednesday - 5 days before the EEG

From: Neuro Portal
To: McSqueaks
7:39 a.m.

Your chart shows that you are scheduled for a bed on the Neuro Floor at Hospital. You will need to be at the hospital and checked in at the outpatient desk check in by 6 AM. As for your rooming situation we don't have an answer for that since we are a clinic based facility and you'll be at the hospital. Also your EEG was approved by your insurance as it stated in your chart.

Huh. McSqueak Toy scratches head as eyes dart back and forth in suspicion.

From: Me
To: NeuroPortal
11:55 a.m.

Hoooo. I’m really glad I asked because my previous check-in was at 7:30 and I’m coming all the way from AR. Thanks!

12:04 p.m.

I call Neuro Floor to get specific directions that I can give my dad for parking and admittance. (And let’s face it because at this point, I TRUST NO ONE. I mean, it’s really sad, but it’s a darn good thing that I don’t. Because we’re not remotely on the ball for getting this test rescheduled yet. Ohhhh, no.)

Alas. With trying to comprehend and write down all of those various parking options, I totally spaced confirming that Neuro Floor actually had a bed for me.

🤪 DUR. 🤪

Dain bramage strikes again. Thankfully, my phone calls for this day weren’t done yet, or I would have been screwed.

12:06 p.m.

I call Insurance Verifiers, like they’d asked me to do “one-to-two weeks before the procedure” if I didn’t receive the standard “you’ve been scheduled for this test on this date and time and place, and your expected copay is: $0.00” in my portal.

I’ve received this type of preparatory message for every. Single. Appointment, test, and procedure I’ve ever had through this medical system in both Arkansas and Missouri.

Except for this 5-day continuous EEG.

Alas. Insurance Verifiers can’t do their job because there is nothing scheduled for me in the system.

I—

See, Insurance Verification is connected to the hospital system, not to EEG Lab’s pen-and-paper calendar, so to their eyes I am a cyber-ghost floating around without a body and without a scheduled bed for all my ‘trodes-putting next Monday.

(Yes, there are actually electrodes in my near future, I swear!)

After reading the gazillion notes that have already been written about this fiasco since December, she first apologizes profusely (even thought it’s not at all her fault) and is blown away by the sheer volume, time, and snafus I’ve been dealing with. Ohhhh, how that warms the shreds of my McSqueaky heart.

Then she confirms that this hiccup is a really BIG deal and that it’s a good thing I have stayed on top of this, because if I had trusted what I and EEG Lab had been told, best case scenario: my elderly father drives me all the way up to Missouri for nothing and we have to start alllllllll over.

For the third time.

Worst case scenario: they scramble to find me a bed and admit me, then do the EEG, but because it was not scheduled correctly in advance, Medicaid has the right to deny payment.

Here’s the super scary kicker: If Medicaid has the right to deny payment because it wasn’t scheduled and authorized correctly in advance, my Hospital Financial Aid emergency safety net becomes null-and-void.

As per Insurance Verifiers: yes. I could have been sacked for the whole bill. Remember the last time I looked up what a mere 3-day procedure of this nature costs? People report paying anywhere from $200 to $178,000.

And mine is scheduled for 5 days.

Not cool.

So the super sweet, super helpful Insurance Verification gal tells me that she can’t do her job and I can’t be certain of financial safety until this procedure is properly scheduled. She’s prepares to transfer me back to EEG, and gives me the direct number in case it drops. (Noooo…that system never drops me, whaaaat?!)

She nicely places me on hold—

Aaaaaaagh! Noooooo!

We interrupt this broadcast
with a humorous interlude.
Today’s deviation is brought to you by:
PTSD BRAIN
Where the hamster-wheel
never stops circling.

My ears! My ears! Oh, the trauma! Ah, the travesty!

I practically roll on the floor laughing over my animal body’s freak-out reaction to hearing the on-hold music I was subjected to over and over and over…inhaaaaale…and over and over during the first leg of this adventure.

And during the shenanigans to simply find a neurologist anywhere in my region who takes Medicaid.

And during the hoop-jumping attempt to ensure that this out-of-state doctor would be covered by Medicaid.

And during the scheduling of all the other friggin’ brain scans I’ve undergone since my emergency CT scan in November.

At least it’s quite the jaunty little tune. Very triumphant as if it just knows that I have a medical success in my very near future! It also endeavors to assure me that “we’re all in this together” with its chorus of happy singers singing, “Whoooooah-oh-ohhhh. Whoooooah-oh-ohhhh,” while a collection of happy bells chime in between. “Ding, da-ding! Da-ding! Da-dingy-ringy-ding! Da-ding! Da-ding…”

Have you, too, been traumatized by this happy-skippy on-hold system?

Do you also start to twitch at the head and one eyelid, while bleeding out your nose and ears whenever you hear this music?

😝🥴😵

I glance at my calendar. May the Fourth is coming up in two days, so it’s only fitting that I do my Luke Skywalker impression right there in the kitchen.

We now return to our regularly scheduled program.

The phone transfer is actually successful. Whoa… I’m returned to EEG Lab and learn that YES, I’m still scheduled for them to come and place the electrodes on me, but NO, I am not scheduled for admission into the hospital.

I now have 2.5 working days left to make this happen.

EEG Gal needs to go check all her notes so she can figure out who she needs to send me to next.

Blessedly, I get the other on-hold music. This tune is quite the relief, because I rarely got to listen to it during the winter shenaniganry, and it was always after talking to people who were really nice to me—and baffled why this was such an issue.

This is the snappy song of:

Chaka-daka
Chaka-daka
Chaka-daka
CH! Ch-ka!
Chaka-daka…

As I wait, I take excruciatingly detailed and snarky notes so I can deliver this episode to you in all its colorful glory, and also to entertain myself so I don’t start blowing the few neurons I have left. Once the notes have been taken, I groove and sing along to the music because I know it so well, and it really is a catchy little tune.

OK, apparently the SNAFU is happening in Neurology. In fact, it’s supposed to be handled by the very individual who had assured me, via portal message earlier in the day, that everything was handled. Same person who had assured EEG that it was handled.

Wrong.

So apparently it’s now being handled.

Again.

Apparently the normal crew was not there on Monday when I first called. Apparently there is a high turnover rate in this department.

(Gee, I wonder why, with a system this onerous, while trying to herd all we Dain Bramage Monkeys with our gazillion glitches, communication issues, and comprehension short-circuits. So honestly? I can really only take my peeved prickles so far, because I’ve watched these neuro-assistants—in person—try to maneuver the scheduling systems between these departments. It’s awful.)

EEG Gal promises to make the phone calls for me—bless her!!!—and she’ll call me back.

12:24 p.m.

She does! She has fostered communication between Neurology and Patient Placement (the people who arrange beds for we ‘trode monkeys to twitch and drool in), and supposedly NOW it’s really handled.

Really-really.

And I really-really do not trust anybody, so I get some food. I conk out and drool all over my pillow. I get up and murder some more trees for DHS, like I do every 3-6 months.

Go me.

3:38 p.m.

I call Hospital Main and ask for Patient Placement. Lo, they have a bed waiting for me, and I am on the schedule. Halle-flippin-lujah!!! They tell me to check in at 7:00 a.m. I tell them that Neurology told me to check in at 6:00, and this difference is a really big deal for my elderly father driving in the dark for an hour, then east into the rising sun. They say…eh…6-ish…7ish…whatever.

Grrrrrrr.

Unhelpful.

Well, I have to do my doo-doo due-diligence anyway, so I thank him and tell him that I’ll see them on Monday, bright and early with bells on.

I take a gander in the portal to see: I am officially scheduled on May 6!

I take a quick screen shot of it because the Trust Issues are strong with this one by now. Alas. It has the date and location, but no check-in time. It also looks different from any other scheduling I’ve received via the portal, but hey. I have it in writing that I’m on the schedule and pre-authorized, so there, and neh.

3:40 p.m.

Since I’m a paranoid Mc-Twitcher by now, I call Neuro Floor just to make sure that I’m on their schedule, too, and to see if I can get some clarification about whose instructions I’m supposed to follow for arrival time. Because looking at the old portal schedule, it said 8:00, even though Neurology had told me 7:30. Now for the same procedure with the same Monday admittance day, Neurology is saying 6:00, whereas Patient Placement is saying 7:00.

Neuro Floor tells me to go by what Patient Placement told me. So I do. Besides it’s smack-dab in the middle of all the varying times I’ve been told. Woot.

I also ask if I’ll be getting a room of my own, or shared with others. They don’t know yet, because they don’t if they’ll have to do any shuffling for walk-ins over the weekend. Fair enough. But at most, I will be only sharing a room with one other person.

Whew!

But cringe. Another person…a stranger…IN mah space while I’m stressed.

I remind myself that, if I get somebody else in the next bed with a TV running 24-7, with people in and out to visit them day and night, at least it will tax my brain that much faster.

And isn’t that what we’re really there to do?

We need to get an in-depth look at what really happens to my brain when I have too much ambient noise, conversations, bright lights, sleep deprivation, brain tasks I’ve been medically removed from doing but still have to do them anyway, strobe lights, and stress. So adding a roommate to this situation will make me even more symptomatic.

Woo-flippin-oot.

3:49 p.m.

Now that I’m officially scheduled, I call Insurance Verifiers. In some miraculous feat of wonder, I just happen to get the same gal I had talked to earlier. They have 30 people in their department, so what are the chances? Apparently the Medical Gods have decided that I’m a good little Squeaky Wheel and I deserve some grease.

She verifies that I’m on the schedule for May 6, but that she can’t see my check-in time either, which she finds odd. But she also agrees: I should go with what Patient Placement said.

Just to make sure that nobody will mark me as Tardy or No-Show at 6:00 in the morning, I pull up my handy-dandy portal.

From: That Infuriating McSqueaker
To: Neuro Portal
4:01 p.m.

OK just a heads up, Patient Placement told me to be there around 7. Neuro Floor wants me to go by what they said. So we’ll be there at 7. Thanks!!

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May 3 - Thursday - 4 days before EEG

From: Neuro Portal
To: Moi
7:08 a.m.

OK, sounds good

Me: totally gassed.

And this,
my friends and fiends,
is why we are called
THE PATIENT.

On Thursday, Dad and I get up early so I can Mc-Squeak into and out of DHS quickly after taking my handy-dandy photo of the date-stamped receipt of my reapplication packet.

(Always make sure you have proof that you delivered it on time. Or get a certified return-receipt to show that you mailed it on time, because these government agencies like to say that you didn’t, so they can boot you off the program for their “clerical errors.” Also: around here, 8:30 a.m. on Thursday is often a pretty good time to zip into DHS and not have to take a number, FYI.)

Afterwards, Dad and I kill an hour-and-a-half at Waffle House, rewarding ourselves for everything we’ve been through over the past half-year since my mom had her second stroke in the middle of my latest neuro-crash. Since neither Mom nor I can drive or navigate all these medical fiascos and government red tape ourselves, it’s all on my Dad’s shoulders.

I’m thrilled to watch him wolf down a waffle.

I’m equally thrilled to wolf one down myself.

Stuffed, we head to the dentist to get my first Invisalign trays, because 23 years of diagnosed but untreated TMJ messed up my teeth as well as my jaw, skull and neck. It’s very important that I have these trays during the EEG, since my TMJ splint had made my sleep-seizures kick up every time we adjusted it. So we’re curious if the Invisalign will have the same effect. (Spoiler: it does.)

At last, we run all the final errands before the weekend hits, and I come home to crash out.

Over the next few days, I gradually shift my staged items back into officially packed items. In between, I finally get to chill out a little and play with something I haven’t had the neurological bandwidth to do in months:

Write brand new chapters for The Wreck Room, my coming-of-age in the 80s novel that I wrote IN the 80s, man. Then I left in a box for 30 years. Until now.

😈🤓😈

As such, there can be only one musical tribute for today’s post:

UP NEXT:

I actually get checked into the hospital and get ‘trodes glued onto my skull!

No way, Bill! Yes way, Ted! Whooooah…Excellent!!!!

Also bogus.

Heinous.

But most triumphant.

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Curious why I needed a 5-day in-hospital continuous EEG in the first place?