Sophie B. vs The Great American Healthcare System, Part 1,000,000, ROUND 1

July 4, 2018
Ambulatory EEG

Let's make this a series.

ROUND ONE TIMELINE:


July 3, 2018

Sophie B. (Plaintiff) was "hooked up" to an ambulatory EEG in Neurologist's office.  Plaintiff went home with hook-up and video camera for overnight observation of brainwave activity.

July 4, 2018

Mother/Conservator Elizabeth A. removed electrodes from Plaintiff's head and returned "black box" to Neurologist office. Because it was a holiday, Mother/Conservator had no expectation for quick reading. Mother/Conservator reports that after two decades, she has no expectations at all.

August 23, 2018, 3:00 pm

Mother/Conservator picks up Plaintiff from adult day program and notes Plaintiff's difficulty breathing. Day program assistant reports Plaintiff had difficulty eating lunch and swallowing. Plaintiff's lips are slightly dusky in color. During entire ride home in Los Angeles traffic, Mother/Conservator pounds back of Plaintiff and encourages coughing and swallowing. Mother/Conservator contemplates bringing Plaintiff to emergency room but is persuaded by own inner compass and more than two decades of experience that no good will come of entering hospital emergency room. Instead, Mother/Conservator makes another of what has been multiple calls to Neurologist office for nearly two months regarding July 3, 2018 ambulatory EEG reading. Mother/Conservator has heated discussion with nurse at Neurologist's office demanding that she should get the EEG reading, that Plaintiff is suffering, that something is wrong. Neurologist gets on phone, admits that July got away from us and assures Plaintiff (whose tiny little mother mind™ wonders if August got away from them, too?) that EEG will be read that afternoon and that he will call Mother/Conservator that night. See Appendix A.

August 23, 2018 4:00 pm

Mother/Conservator arrives home with Plaintiff and proceeds to remedy problem of excess mucous and choking. She is helped by Caregiver and stabilizeS Plaintiff who falls asleep.

August 23, 2018 8:00 pm

Mother/Conservator receives phone call from Neurologist who expresses shock that Mother/Conservator was "right," that Plaintiff is indeed having recurrence of ESES, a rare epileptic syndrome that Mother/Conservator has suspected Plaintiff of having but has been repeatedly told by several Neurologists over two years that its recurrence is unlikely. Mother/Conservator goes into full dissociative mode while on telephone and intelligently discusses former incidences of ESES, the treatments for said incidences and otherwise directs Neurologist to treatment modality that was successful previously. See Appendix B and Appendix C.

Dissociative mode gives way to extreme distress and mental suffering of Mother/Conservator, attributed to decades of experience dealing with this shit, grief over Plaintiff's ongoing struggle and suffering and anticipation of forthcoming battle to get treatment for Plaintiff. Given experience, strength, history of mindfulness meditation and love and support from immediate family members, Mother/Conservator puts on big girl underwear, girds her loins and otherwise readies herself for the fight.

August 31, 2018

After multiple calls with Neurologist office to "check" on status of IVIG treatment (see Appendices A and B for clarification), Mother/Conservator is directed to Home Health Agency nurse who says that "this is not approved by the FDA as a treatment for epilepsy, so insurance will deny it." Mother/Conservator corrects Home Health Agency Nurse that the treatment is actually FDA-approved but is considered "off-label" for ESES treatment and that she is aware of possible denial. Mother/Conservator informs Nurse that treatment has "worked" for Plaintiff twice before and was partially covered by Insurance Company after some "wrangling." Nurse agrees to "write up" notes as dictated by Mother/Conservator about past history of treatment with IVIG. Nurse tells Mother/Conservator that she will "get back" to her after the holiday.

September 3, 2018 10:00 AM

Home Health Agency Nurse calls Mother/Conservator on telephone while mother is riding in car after dropping Plaintiff off at adult day program. Health Agency Nurse asks whether you might want to be more comfortable at home receiving information. Mother/Conservator tells Home Health Agency Nurse that she is fine using the Bluetooth option on her telephone in the car. Mother/Conservator wonders in her tiny little mother mind™ whether the Health Agency Nurse thinks she might have an accident when she "receives the news." Mother/Conservator finds this humorous and assures Home Health Agency Nurse that she can take it. Health Agency Nurse says that Insurance Company has declined the doctor's prescribed IVIG treatment for Plaintiff for what Mother/Conservator hears as blah, blah, blah, blah, blah. Health Agency Nurse states that an appeal will begin with Neurologist perhaps joining the appeal and personally speaking to Insurance Company chief doctor who has made this decision. Mother/Conservator listens carefully and says indeed. She can't recall whether she said, of course! or is there anything I can do to expedite this process so that my daughter can get treated for her ESES? Her tiny little mother mind™ wonders how many people are employed for this tomfoolery and thinks of some suitable imprecations, directed today toward Supreme Court Justice nominee Kavanaugh who, if confirmed, will most surely make Plaintiff's life and millions of others more miserable, particularly in regards to healthcare. Mother/Conservator doesn't share the inner workings of her tiny little mother mind™but rather reminds Home Health Agency Nurse of Plaintiff's secondary Medi-Cal insurance. Home Health Agency Nurse reports that the Medi-Cal office worker in Home Health Agency will begin to look into Medi-Cal coverage, now that Insurance Company has issued a DENIAL. Mother/Conservator finishes conversation pleasantly by remarking how frustrating this all is for everyone, even though inside she is dying, her tiny little mother mind™ shrunken, her girded loins gaping, her big girl underpants riven.

ROUND ONE:

Sophie B vs. The Great American Healthcare System

WINNER: The Great American Healthcare System
LOSER:    Sophie B.

Appendix A:

Mother/Conservator reports that Neurologist is wonderful in every respect, so while she is frustrated and upset over the delay in the reporting of the EEG results, after more than two decades of dealing with this shit, she is cognizant of Neurologist's time constraints and being stretched too thin. She assures Court that she'd rather deal with a Nice Neurologist Who Works With Her than an Asshole Neurologist, the latter being the norm and with whom she has had plenty of experience. Mother/Conservator also assures the Court that she is well aware of The System and its shortcomings, that she has worked most of her adult life in it and to improve it, that her efforts haven't amounted to much of anything but that she has virtually kept her daughter alive and sometimes thriving in spite of it.

Appendix B:

2005: Parents of Plaintiff (not yet Conservators because Plaintiff is a minor) are given "three choices" of treatment when Plaintiff is diagnosed with rare syndrome ESES (diagnosed only after Mother insists on hospitalization of said Plaintiff, given drastic decline in Plaintiff's physical abilities with no urgency to attend to this decline by Neurologist at time). Choices will be designated "Door Number One, Door Number Two, and Door Number Three" in keeping with Mother's dark, albeit sustaining, sense of humor.

Door Number One: High dosage steroids
Door Number Two: Valium
Door Number Three: Intravenous immunoglobulin (IvIG)

Mother chooses "Door Number Three" and treatment commences in hospital. After some "wrangling," private insurance company agrees to partially pay for ongoing treatments over the next six months in Plaintiff's home. "Wrangling" should be noted as "understatement" as Mother is left depleted and experiences considerable signs of post-traumatic stress syndrome, triggered by repeated "wrangling" in previous decade.

"Door Number Three" treatment of IvIg restores Plaintiff's brainwave activity to previous "normal" dysfunction and Plaintiff recovers.


Appendix C:

2011: Plaintiff has occurrence of ESES and is prescribed "Door Number Three" again, given its success in treating previous incident of ESES. Insurance company denies treatment but is eventually warned down by repeated calls from Mother, one of which includes a threat to hospitalize Plaintiff so that treatment can be initiated in hospital, requiring Insurance Company to pay. Insurance company agrees to pay for treatment, treatment is administered and Plaintiff recovers.

Disruptive Women

I periodically check out an organization called Disruptive Women in Healthcare to see what's going on.  Despite the fantastic name, it looks a tad too corporate/non-profitty for me (that's how disruptive I tend to be), so I've never looked into joining it. Anybody out there on the interwebs who's a member of Disruptive Women in Healthcare?

I'll show you disruptive.

I think Sophie's name and persona is being used for MediCal fraud. This weekend I got a stack of papers, including 5 Explanation of Benefits for services rendered three years ago on arbitrary dates for arbitrary amounts of money. The provider is The Department of Children's Services. The insurer is HealthNet. The dates were all in the fall of 2014, and we did not go to a doctor on any of them. We've never used HealthNet, although straight MediCal might have once. The Explanations of Benefits came in a big packet, each one followed by the exact same sequence of nine pages with language translation information and my "rights." That was 45 pieces of paper in the envelope, only 5 of which were the actual business at hand. Bear with me.

Don't be disruptive. Just listen.

Because it was Friday, and because I am disruptive, I decided to call the number on the sheets of paper and ask what the hell was going on. I spoke to four different persons in nearly two hours -- let's say their names were Rhonda, Wanda, Larry and Jill. Rhonda was the quickest to bump me off to Wanda who was the type of service professional you can imagine staring at a Service Manual and reading the script best suited for Disruptive Women. Whenever I said "thank you, Wanda," or "Ok, Wanda," she said, "No! Thank YOU!" and we might have gone back and forth for hours with pleasantries if I weren't so disruptive. I won't even tell you how apologetic she was every time she put me on hold and popping back in periodically to make sure that I was all right. In the end, Wanda sent me to Larry who -- quite literally -- FREAKED OUT. When I explained my "problem" to him for the second time (the first time, he kept insisting that he was trying to help me but kept asking me really stupid questions, so I admit to being impatient), in my most disruptive voice, he said, "Whoa, whoa, whoa. That sounds like something really big. Really big." Larry was undone and advised me to call the Ombudsman. He said Ombudsman in a tone of voice that conveyed the mystery of The Wizard of Oz and then, very, very solicitously spelled it out for me. Because I'm disruptive (and perhaps a teensy tinesy bit stressed), I actually interrupted him at that point and said, Larry, I KNOW what an Ombudsman is and how to spell it thank you very much. Larry and I said our good-byes, and at  approximately 4:54 pm, I called the number Larry gave to me and spoke to Jill who got a gold star for even picking up the phone so close to closing time and then after the first explanation sighed and said that I would have to call the fraud department of MediCal on Monday morning.

Are you still reading?

I put my finger to my temple and did a Rodin pose and then recalled a similar stack of papers that I received earlier in the year or maybe last year with a whole lot of weird amounts of money paid out. There was one in there from 1999, when Sophie wasn't even a recipient of MediCal, so I called then and reported "fraud" and maybe even wrote a post on the old blog about it. Because I'm a disruptive woman in healthcare and mighty efficient, I pulled out that stack of papers and found my notes. Needless to say there has been no follow-up, and now I'm facing a Monday morning call to the Fraud Department.

The most disruptive thing I'm thinking at this point is who would want Sophie's medical identity, anyway? What would be great is if we could just switch with someone healthy milking the system and really go to town on the amazing benefits.

The Accidental Thanatologist

That is my dear friend Jody and her daughter Lueza. Jody was the first friend I made after Sophie was diagnosed with infantile spasms in 1995 in New York City. Jody's daughter Lueza was only a few months older than Sophie, and she, too, had been diagnosed with infantile spasms and severe cerebral palsy. Jody and I walked the city streets with our girls in carriages and strollers. We placed our babies next to one another in cribs, played music for them, held them and one another. We went to a mothers support group at the hospital on the east side. We despaired and we exulted and we laughed with rue about our new lives. Jody sent me a subscription to a newsletter in those pre-Internet days -- it was called Mothers From Hell -- and was obviously geared toward our sort. Dark, funny, dramatic, despairing and resilient. We both moved to California, her to the north and me the south. We had more babies, she a daughter and me, two sons. We had long spaces and distances but stayed friends, talked for hours and hours on the phone, laughed more often than cried, loved one another and our beautiful daughters and sons.

Lueza died unexpectedly on April 4, 2011. I was driving up Fairfax, crossing Beverly Blvd when I heard from Jody, and I took a sharp right into a bank parking lot, drove down the ramp into darkness, sat in my car and wailed for a half an hour. Whenever I pass that corner, that bank, that ramp into darkness, I think of Lueza and her tremendous light.

Jody is an immensely talented actor, singer and writer. She is adding pieces to her blog, The Accidental Thanatologist, that you must read. It is, as she says, a walk through love and catastrophe.

I love you, Jody and am grateful for your constancy. And your writing is smashing.

Obvious Things About Caregiving, Insanity and Cognitive Decline

Me, in my declining memory years

There's a story making its rounds today titled Disability Caregiving May Lead to Memory Decline in Moms.

Sigh. Go on and read it, especially the parts where they talk about dads, except that for them they use the word fathers.***

Feminist language sigh.

It reminds me of another story -- years ago -- that demonstrated that providing care to a family member with a chronic illness or disability is not associated with increased risk of death in most cases, but may instead be associated with modest survival benefits for the caregivers. That one was titled Caregivers Live Longer, Study Says, and it was in the American Journal of Epidemiology. I wrote about it here.

Both articles were in a pretty decent disability aggregator website called Disability Scoop whose digest I receive once or twice a week in my inbox. 

Can I be honest? 

Studies annoy me and seem, sometimes, like a giant waste of time and money. Take a good look at me and any number of my comrades in arms (except perhaps for the everything is a blessing and everything has a meaning and is part of God's plan people), and it's pretty clear that we have a hard road to hoe. Do we really need to be studied before getting some help from the Powers That Be? I read about memory decline in "moms" who do the majority of caregiving and think, no shit, Sherlock.  And given that my comrades-in-arms are also some of the strongest, most kick-ass REAL tiger women on the planet, I think no shit, Sherlock, when I hear that we live longer than "normal" folk.

As far as the new study goes, maybe losing your memory in a long, long life ain't such a bad deal, anyway.

Right, Moms?




***Before you get your boxers or tightie whities in a wad, I know there are plenty of dads -- or fathers -- out there doing the primary caregiving of their disabled children. This post doesn't include or exclude you.

Thoughts and Actions After Leaving Your Heart at LAX

1. Thought: Does my life have a purpose outside of the beautiful boys and girl that I've brought into the world, the children who order my days and nights?
2. Thought: What will I do if a missile hits their plane, and it goes down? Will I become a vengeful, crazy woman intent on destruction? Will I be a domestic jihadist, maybe even a conservative? I know this sounds insane, but I'm nothing if not honest. Notice that the above photo is a selfie when the boys landed in Atlanta, so you can disregard any thought of your yellow dog becoming a member of the armed forces. You can tell they were thrilled when I placed my order via text.
3. Action: Try the new bakery on the way home and around the corner from the empty house. Order an incredible croissant with roasted tomato, bacon and Gruyere and some coffee for there and a Paris-Brest to take home. Sit down at a long table and pour coffee into beautiful mug from a silver carafe. Drink coffee, eat croissant, page through an actual copy of The New York Times, which feels good in the hands but is so filled with horror that you must push it aside. Gaze at the to-go box with Paris-Brest inside. 
   
4. Action: Decide that it can't wait and eat Paris-Brest -- all of it.
5. Thought: Know that some friends would call this taking care of yourself and others' emotional eating. As you lick the insides of the box, where the hazelnut cream is smeared, think I don't give a damn about anything in this moment.
6. Action: Get home and wander aimlessly about the quiet house, waiting for Sophie to get home from a bike ride with her father. Straighten up boys' room, make beds lovingly, still mournful of their inhabitants' absence. Notice, suddenly, that elder son's clear retainer is lying in the folds of the navy bean-bag chair. 
7. Thought: I wonder if he's been wearing this thing at all over the last month or so? What the hell? Where is the case? Those $5,000 teeth are probably getting crooked as we speak. Decide to have a few words with the kid as soon as he lands.
8. Action: Work for a couple of hours on the project that my friend M gave me. I am so grateful for this work, and it's something so worthy that the work is a pleasure.
9. Action: Make barbecue chicken for a friend in the hospital using the broiler in my 1928 oven for the first time. 
10. Thought: Who knew the broiler worked and was so great? I've raised three children and never made barbecue chicken with the broiler. What the hey?
11. Thought: Are we as a culture evolving into persons who will all have breast cancer and autism? It seems that way as five people I know have recently been diagnosed, and I know countless children with autism.
12. Thought: I don't make a big deal about the womanly cycles, menstruation, or The Change, but really -- I'm nearly 51, and there don't seem to be signs of it, and I definitely don't need to have any more children, and -- let's face it -- buying feminine hygiene products for 38 years is a drag.
13. Action: Take Sophie for a long walk to fend off the blues which are associated, I guess, with the two boys being gone and #12 above.
14. Action: Send the elder son a text about the left-behind retainers that were found in the folds of the bean-bag chair.

Reader, tell me what sort of thoughts and actions you're having and doing today.

How We Do It, Part XXXVIII in a series

How does something as outrageous as the above succulent exist, there in the dirt by the sidewalk on my street?

I ran into an old friend at Trader Joe's yesterday, the mother of one of Sophie's classmates, a young woman with multiple disabilities who has been in school with Sophie for fifteen years. My friend is an Orthodox Jew and lives not too far from me, but we run in different circles and it's only rarely that I speak with her. Yesterday, when we literally bumped our carts together, we both exclaimed how happy we were to do so. We threw our arms around each other and smiled. She wears the traditional garb of the Orthodox, a long skirt, sensible shoes, a nondescript blouse. Her hair is obviously covered by a wig. I was in jeans and a long-sleeved tee-shirt, clogs, my hair twisted up with a clip. I asked her how her ten (yes, TEN) kids were, and she said, They're good, thank God, thank God. She smiled and I smiled. Later in the conversation, I might have said the word hell, but I quickly apologized and she laughed. She told me how happy I made her. We shared stories of our girls, we talked about pads for soaked sheets (the bane, for both of us, of our existence -- the changing of the sheets). My friend has a dark sense of humor. She is one of my people. We ventured down the dreaded road of What Is Going to Happen After High School. (neither of us has any idea). She shared with me the pressure she feels from friends, even from family, to put her daughter in a home, give her away. I nodded my head. I understand. They want me to have what they call a normal life, my friend said. Ha! I replied. She is my life, my friend said. I nodded my head. We laughed at these friends, wondered why they didn't just pitch in and literally help. Change the sheets one morning! I shared with her how even a therapist I know told me a story of a couple who put their child with Down Syndrome into residential care when he was a baby, certain that that action had saved their marriage and subsequent children. We looked into each other's eyes and I imagine saw similar darkness and light. I would never judge anyone for choosing to do that, I told my friend, but I imagine it's harder than THEY say. We both agreed that we'd as soon shut down, cut out a piece of our hearts, be numb and dead to the world we know than make that decision. We talked for a bit more, hugged again and said good-bye.

Sophie's outrageous existence has brought me these outsider friendships with women and men that I would never have encountered otherwise. There's something beautiful and terrible in the symmetry of our lives, order and chaos, sharp and fluid, damaged and graced.

Izzy and Erika

I drove about an hour south today from Los Angeles to visit my dear friend Erika and her beautiful little girl Izzy who has been hospitalized for over two weeks. Izzy has Angelman Syndrome and was in status (seizures not stopping) so had to be put into a chemical-induced coma to allow her brain to rest. As if that's not enough to deal with, when they weaned her from the coma, she got into a little trouble with her breathing and adjusting to life outside of intubation, so she's still in the PICU, struggling. The amazing thing about Erika is that despite a hellish few weeks, she not only looks adorable but continues to laugh uproariously at all the absurdities of this life -- like the sign above that welcomes one to Fountain Valley, a city basically off a huge Southland highway that's one of the plainest and most nondescript places you could ever imagine. That motto A Nice Place to Live was written for the likes of Erika and me who survive this bizarre world we live in by reveling in the absurdity quite literally. When Phil, Erika's very adorable husband arrived, I took Erika away from the little hospital to a nearby strip mall where we enjoyed delicious Greek food and exchanged horror stories. Erika shared a bit of her reading with me (dark tales of dissociation and split personality), I told her about my own dissociation during a visit to a brain surgeon years earlier, and we agreed that hard-core brain surgery for our girls was a line we'd probably never cross. We were actually shrieking together at one point, over the voices of the Vietnamese who have evidently settled in vast numbers in Fountain Valley because fountains are blessed? While my own horror stories pale in comparison to Erika's, the camaraderie between us is something that I just feel profoundly blessed by and another reason why these internets are just a powerful place to connect to others.

I'm sending all my love and healing thoughts to little Miss Izzy, who, while currently hospitalized in a nice place to live, must get better soon and go back to her little house by the sea. As for Erika, I'm hoping she'll get to wash and style her hair at some point soon.