48 Plus Hours In: Hospital Chronicles, Meta

There's something sort of meta about that photo, isn't there? What does meta mean, anyway? Among, with, after. Something like that, I think. Sophie's brainwaves, Sophie and then, beyond, Sophie. Her face fascinates me.

I'm not sure what those eyes are telling me, but the word implore comes to mind, and those eyes both sustain and torment me.

We're sprung from the hospital and home again. Sophie's ESES is still pretty bad, but she has no underlying infections or thyroid problem or lung issues and the results of the autoimmune panel are still pending. Teenage Neurologist asked whether we'd consider high dosage steroids (it's one of the standard treatments for ESES), and I said no not ready. The other two times Sophie had ESES, the IVIG worked, and we still have room for it to work. I'm also going to fiddle again with the CBD and the CBDA and we're going to get this thing beat.

If you have a thing for science and immunology, put your thinking cap on and tell me something I don't already know. Here are a few things to ponder:

1. Sophie began seizing within a couple of weeks of her initial infantile vaccinations, given to her to boost immunity and prevent disease.
2. When Sophie was given ACTH, a high dose steroid, she got worse, not better. But she also had TWO MORE VACCINATIONS during the steroid wean (we knew nothing about anything in 1995 so didn't blink when doctor ordered four and five month vaccines. The only one they held was the pertussis because back in those days it was the live cell pertussis or what we called the DTP.)
3. Whenever Sophie gets a high fever, she has NO SEIZURES. This is a phenomenon that has been noted in some studies and occurs in some people with autism as well. Fever is the body's protective immune response.
4. The only treatments that have ever helped Sophie for any period of time are intravenous immunoglobulin which basically floods the brain with bazillions of antibodies that dilute out the "bad" ones that have "leaked" through the blood-brain barrier and are attacking her brain (this one is hard to wrap your head around as it's sort of meta-seizure, but just go with the flow) and cannabis medicine (potent anti-inflammatory).

If Teenage Neurologist can be one, so can you. Remember what meta means: 

Among, with, after

24 Hours In: The Hospital Chronicles (warning: adult language is involved)

When I was sitting in the ER yesterday, listening to the groans and moans of the traumatized behind the vinyl curtains, I was busy writing a story in my tiny little mother mind™about Issac The Nurse who wore beat-up tennis shoes, a scruffy beard and a yarmulke. We were in the ER at one of Los Angeles' most prestigious hospitals in order to gain admittance to get an overnight EEG. At 11:15 in the morning, 24 hours ago as I type here, we were placed in an ER bay to wait for the bed in the hospital so that we could gain some knowledge about Sophie's ESES shenanigans. We had originally planned to get an ambulatory EEG, but I was concerned about all the co-morbidities of the ESES (the increased seizures, the choking and inability to walk, etc.) and had had enough of it so insisted to The Nice Neurologist, who agreed, that maybe we should just go in to hospital to figure stuff out (pleaser remember this phrase for later, Reader) and get some tests, etc. I don't want to bore you with the details, but suffice it to say that Sophie and I sat in the ER bay for the next ten hours. When we finally got a room, we were told that it was too late to hook up the EEG and that it would be done first thing in the morning. Here's how I reacted:

My friend Sandra actually sent me this picture on about hour seven or eight in the ER, and let me tell you, Reader, that's what got us through. Even now, as I post it, it makes me laugh out loud. The only reason we needed to hook Sophie up (that's neurological parlance for attaching electrodes to the scalp in order to read the brain's shenanigans) was to see the OVERNIGHT ACTIVITY. Again, I don't want to go into details, but at some point The Hospitalist (further evidence of the corporatization of healthcare in this g-d country) who was earnestly trying to get a neurologist or a fellow or a resident to get the EEG thing going, told me that it was like talking to a wall. I called on the great forces of my tiny little mother mind™and asked him to send The Wall my way, but IT NEVER HAPPENED! I apologize for the Trumpian punctuation (whom, I might add, gave me my second massive laugh of the day when I read this quote:

)


Sophie's father came to the hospital at hour eleven, and I went home to sleep. When I arrived back at the hospital this morning, Sophie was still not hooked up and eventually Damage Control, in the form of The Hospitalist and Patient Care arrived in the room to talk me down.

Remember this?

Shortly after Damage Control, a tween with a nose ring and scuffed-up Converse shoes arrived to hook up Sophie, followed by a teenager who called himself The Resident Neurologist and who neurexplained to me what seizures were and how certain drugs worked. He also asked me whether our neurologists had ever thought of surgery for Sophie or the VNS. My tiny little mother mind™ was blown.







Wasn't I telling you a story?

Issac means laughter, Issac The Nurse said when I told him that I liked his name. We then had what I would consider a Biblical conversation (I actually have read the Bible several times and studied it both in a faithful sort of way in the last century and also as a very beautiful text that I do not believe as the word of God in the literal sense) about Issac and his mother Sarah who was believed barren when God finally graced her with a child, the news making her and her husband Abraham laugh uproariously at the thought of it since Sarah and Abraham were nearly one hundred years old. People lived longer then, Issac the Nurse said as he busied himself with Sophie, and I replied, No! Didn't they have shorter lives? Most women were dead in childbirth. Issac the Nurse informed me that this wasn't the case, that Issac From The Bible lived the longest of the three in his family and died at 180 years. I said I thought those numbers were probably highly significant and symbolic, but Issac the Nurse insisted that no, it was true. 

The Grace of Caregiving

I'm typing this from Sophie's hospital room in Santa Monica where we arrived yesterday early afternoon after a visit to the pediatrician turned into a ride in an ambulance with Sophie struggling to breathe and a possible diagnosis of pneumonia.

Here's the good news: She doesn't have pneumonia.

Here's more good news: The care she received from the pediatrician, from the paramedics and all the ER docs and nurses as well as those attending her in the hospital has been impeccable. I just finished speaking with her attending doctor who stopped the oxygen and is refraining from giving her any more antibiotics as she is absolutely certain that there is no sign of infection. We might even get to go home later today or this evening.

Here's the bad news: This is the second time that Sophie has gotten into trouble with the increased secretions that are a side effect of the benzodiazepine that she's been taking for the last decade -- let's face it -- her entire life, more or less. Coupled with her reduced motor ability, she doesn't have the same capacity to clear the secretions and is probably aspirating more often than not. SO, I've been in touch with her neurologist and her regular doctor to tackle the problem. We are talking mechanized vests, oxygen for home and perhaps a palliative doctor. For those of you who might gasp at the word palliative, it's not the end-of-life kind of care but rather the kind of care that improves life quality as much as possible when you're dealing with a chronic condition. The fabulous attending physician is going to give me a referral to one, so we'll see how it all plays out.

It's been a hard few days. Ok. It's been a hard few weeks. Ok. It's been a hard few months. Ok. It's been a hard few years. Ok. It's been a hard couple of decades. Sophie is as resilient as hell, and that gives me strength. You know that I don't believe in an instrumental god that is directing the show, that is making things happen for good and for bad. My supplications are not directed toward that sort of help, and while I appreciate the prayers of others as good intentions, they do not comfort me nor do I believe they change the course of events. I am hard-pressed to even describe the incredible lifting of weight and sorrow and darkness from my mind and heart. When it happens it seems miraculous. I imagine it to be a kind of collective unconscious -- the love directed our way from family, from friends and those who come into and out of our lives -- a love that is in turn reflected outward.

I don't know why I am able to hold incredible sorrow and even despair along with joy and optimism, but I think it has something to do with what I call grace.

I feel much gratitude for what I believe is the imposition of grace, bestowed on me by Sophie and the years of caregiving, the relinquishing of false notions of control and illusion. Does that make sense?

As I've typed, Sophie's had several large seizures. It's not easy. Grace has nothing to do with being cured or even being "normal." I know next to nothing in the end, nor do the doctors, nor do the prayers or supplicants. Bad things happen all the time to very, very good people. Death is a certainty for all of us, and suffering, at some point in our lives, if not all, is as well. Grace has everything to do with healing, though, and when it collides with love -- well -- we're good. We're healed.

Hospital Thoughts - Day Six

Sophie at home in her lavender lair

Sprung.

We have left the hellspital where we were taken care of by a lovely team of doctors and nurses and nurse assistants and EEG technicians and birds and butterflies and dragons and tigers, oh my. Thank you Michael, for spending nights and mornings with our girl. I thank you out there in the internets for your words of support, your emails and texts. Thank you, Tanya and Chris and Greg and Lisa for visiting me and bringing me food. I would surely have gone completely bonkers without your company. Thank you Moye for your conversation and sense of humor.  You've been sustaining me for twenty-two years and my friend for over thirty-five. I love you. Thank you Cara for taking care of my boys. Thank you Brittany and Aaron and Kathryn and Ben for dropping off food and flowers. You brightened all of our days. And dare I say it? Thank you Drumpf for making even a hospital stay with giant IV doses of Vimpat, giant hives, giant doses of Onfi, and hospital-acquired urinary tract infections as well as hordes of Doctors Who Don't Know How To Help seem utterly benign in comparison to your grotesquerie.

Hospital Thoughts - Day Five

It's all Dr House over here with a clusterfuck of neurologists and dermatologists and possibly allergists and rheumatologists all trying to figure out the Great Hive Seizure Mystery. Great minds don't think alike, at all, and everyone has a different suggestion for what ails Sophie. There will be more tests, and I'm getting just a teensy tinesy bit sick of all of it. Sophie has acquired a urinary tract infection while here which all conceded was hospital-borne. Charming.She is now on an antibiotic for that. She isn't getting any more Vimpat, so I guess at the very least we shall be skipping out of here on only one anticonvulsant in over eight years. That the one anticonvulsant is the benzo Onfi that we rather laboriously weaned her partially is a major bummer, but I'm not going to complain. There's still the hive thing, and the dermatologist who was literally the only physician that's appeared who's older than I am suggested that it was probably coincidence, I sighed and felt that momentary panic that is probably PTSD but has some validity as the real terror that once again, no one knows. Methusaleh had a six-pack of residents and students who were terribly sweet and earnest. One even asked me if I'd read Ann Fadiman's When The Spirit Catches You, and I almost told her that I read it probably before she was born and that despite its reputation for being culturally competent before that PC expression was even invented, I still feel it was biased toward the almighty Western medical system. Instead I told her that it's a beautiful book and smiled. Methusaleh talked about all kinds of things that hives can come from, and, frankly, I started to get a little nervous because it's all so --  well -- tentative and hypothetical. All suggestions are floated to me, sitting like some kind of dowager or dragon queen in a putty-colored fabric chair with a magnificent view of the mountains to my right, out of reach.I'm a dragon queen with a Bachelor of Arts degree in both English and French literature. I'm trying to finish a Norwegian novel called The Birds by Tarjei Vesaas but have felt so distracted the last few days that it's all I can do to ask why the food services department doesn't carry fresh fruit and only canned. My tail is curled up under the chair and a copy of Real Simple lies open on the purple plastic footstool to a recipe of Polenta Bake with Shrimp. But that's only a decoy as I'm actually plotting an aerial escape out the window with Sophie under my arm. Our cave is glinting there, under the setting sun and that long, purple cloud.