We're a few weeks away from a painful anniversary in our household. It'll be twenty six years since we got hitched to the abusive, cruel, callous condition known as refractory or intractable or uncontrolled epilepsy. Of course we had no knowledge of those adjectives back then. We clung to the hope that the medical professionals dangled in front of us--- that some kids actually "grow out of" certain epilepsy types. We had no clue the number of ambulance rides, hospitalizations, medication trials and errors, medical procedures and so on. We had no idea of the costs of this despicable condition---loss of moments...and days...and months...and years. We simply had no idea.
This last week ranks among our worst ever. When I heard the thump in the upstairs bathroom at 11:30 last Tuesday night I truly was not prepared for the sight that I viewed from the hallway : Michael laying face -up, head adjacent to the shower entrance, feet facing the door. Underneath his head a pool of blood. Blood everywhere actually- covering one front side of his boxers, covering the metal towel bar that was dislodged from its holder, blood on legs and feet. Lots of blood. And then, my bloody scream summoning Barry and Meaghan , Meaghan's hysterical call to 911, Michael unresponsive as I knelt beside him, in his blood, calling his name, witnessing a slight tonic seizure, then another. Sirens and lights,six paramedics and firemen ascend the stairs. Through sobs I explain all I know; I heard a thud, found him like this---bleeding, seizing. A few of them take our place in the bathroom. I step into the hallway making footprints with my bloody feet. Did I mention when I was kneeling beside Michael's pale body, looking at his fluttering eyelids, cradling whatever part of his body I thought wouldn't hurt him; did I mention I thought he might die?
Someone's asking Barry and I medical history questions. When did Barry manage to get dressed? I can hear Meaghan crying. Or is that me? I can't fully hear what's going on in the bathroom, but in what seems like a flash they emerge. Paramedics, firemen, Michael strapped to a stretcher---bleeding and seizing. Meaghan wants to go in the ambulance. They tell us where they're taking him. I say they can't. It's not our hospital. His neurologist isn't there. It's a Level One Trauma Center they inform me. Oh yeah , I know that. Level One trauma. Okay, okay. Barry nods at me, my cue to go with him to the hospital. Did we talk on the way or did I just cry? We arrive in the waiting room. Meaghan's already there. She tells us they won't let us in until they do whatever they're going to do. We wait. That's when I take in my jeans and feet. Blood spots and smears. Bloodied feet in flipflops. A physical and emotional wreck. I text Michael's neurologist. She is a friend as well as an outstanding epileptologist. She calls me back right away. What--- it's 1:00? She's soothing. I calm down a BIT. We're frayed around the edges our little trio. My innocent-looking daughter's cursing and swearing amuses the burly Emergency Department security guard. We're told we can come back---two of us. The emergency department MD gives Barry and I a report. The CT looks fine. That's good. He has about twelve staples in the back of his head. It's not a deep wound. Jesus. Oh yeah, head wounds bleed profusely. He's very sedated we're told. Ummm. We certainly can see that!Two administrations of Versed, two of IV Ativan, a bolus of Keppra. Keppra? I start in on the ER doc about how adversely Keppra has affected Michael in the past. I hear my anger and frustration. I sense his defensiveness. I keep going though. It's a short ambulance ride; less than seven minutes I say out loud. That's a short time to give all those drugs. Oops, I've offended again. Yes, I agree he was seizing. No I say to the report of tonic-clonic seizures insisting he only has tonic. A little self talk. I'm splitting hairs, They're putting my kid back together. I get a text from Meaghan. Why aren't we telling her what's going on? I've already said we're frayed. Barry and I sit by the stretcher/bed. Michael has a brief tonic. It goes unnoticed. No EEG hook up. Is that odd I wonder. Just parents by the bedside. We won't report these. They're baseline---Michael's normal. We won't let them treat these. Barry and I agree to this without words. He suggests I go home, get cleaned up and come back and then he'll do the same. I pick up Meaghan in the waiting room and hand her Barry's keys. We head up the highway home.
We open the front door. Katie greets us. How did she get out of her crate Meaghan wonders. Meaghan says she put her there when the fire department arrived. I can't remember Katie at all from a few short hours ago. Where was she when we were in the bathroom? She must have been terrified. She must have been looking for Michael the entire time we were gone. We take her upstairs with us following bloodstains like breadcrumbs. We stare at the bloody carpet in the hallway- smudged and ground in by numerous footfalls. I tell Meaghan I have to do something about this before my Mom and brother Gary get here tomorrow. Meantime, we survey the bathroom: several blood-soaked towels in addition to some paper ones left behind by the fire-rescue crew are strewn around the floor. There are several pools of congealed blood, smears of blood on the wall, a large linear crack on the wall, splatters of blood everywhere. We grab a Lysol wipes container and start wiping, square by square, under the cabinets, on the cabinets. Meaghan says she wants to finish cleaning by herself. She's too wired to sleep and she just wants to get rid of it. I get it.
I take a hot shower. It doesn't feel as cleansing as I'd hoped. I change. By the time I'm ready to head back to the hospital, Meaghan is finished cleaning the bathroom. She wonders how anyone could ever think they could get away with murder. The god damned blood is everywhere! She'll take Katie to bed with her. That should be a comfort to both of them. I kiss her goodnight and head back to the hospital.
I park in the Trauma/Emergency parking lot banking on the fact that hospitals move slowly in finding beds for emergency patients.The nice security guard buzzes me in. Michael's sleeping and still having a brief tonic seizure every five to twenty minutes----still not observed by anyone but us. Barry looks beat. He says he'll stay until Michael is transferred to a hospital room. Minutes later we're told Michael is ready to be transported. We thank the staff for all they've done and what they didn't do. We follow the stretcher through a maze of hallways to the newest wing of the hospital. The room is very spacious and extremely clean. It is adjacent to the nurses station. All good. The night nurse is nice. He says the night hospitalist will check in with us soon. Barry gives me a hug and a kiss and heads home. I drag a chair over to Michael's bedside. I feel exhausted and I think I might even close my eyes and get some sleep. Two hours later, when the sun rises, I am still awake. Michael was snoring and seizing----small tonics more frequent than usual. The night hospitalist arrives. He speaks with me kindly and notes that when Michael awakens from the drugged state he's in, he'll likely be discharged. I'm told the neuro and trauma services as well as the day hospitalist will stop by. I've already told everyone our goal is to get out of the hospital and into the care of Michael's neurologist ASAP. I brought his AM meds with me when I came back to the hospital. We can take this the rest of the way. No need for additional medical intervention beyond the IV drip.
The day team arrives. The nurse asks what name Michael likes to be called. And me. She says "Can I get you a cup of coffee Mary Lou"? I surprise myself when I respond yes. I drain the dark brown liquid and feel like a different person. Maybe I've never needed caffeine so badly before. I don't know---I'm just grateful for the effect. Barry walks in shortly thereafter. I notice he's still in the same clothes. I ask him if he showered,fully knowing the answer. He used his time at home to catch some sleep. He can do that just about anytime, anywhere. I admire this ability. I do. He wants to know if I want something to eat from a cafe downstairs. I still don't trust my knotted up stomach so I decline. He returns with, and devours, a breakfast sandwich. I admire this ability. I do.
It's now 8 am. I leave a message with our carpet cleaner to check if it's at all possible to squeeze us in. I briefly explain our situation and the fact my Mom and brother are arriving today. I don't want them to see all the blood. I'd rather not see it again myself. Josh rearranges his schedule. He has a customer for life. Somehow this makes me feel just a little bit more in control. Somehow.
The day hospitalist arrives. He's a bit too jovial for my liking and he seems very surprised we don't want to change any meds until Michael is seen by his neurologist. He says once Michael wakes up he can have a soft diet. What? Just keep quiet Mary Lou, just keep quiet. Nod. He asks how long Michael has had epilepsy. He exclaims with a great big smile on his face, "seems to me you've got 26 years of good karma coming your way!" Nod. Smile. I turn to Barry. "I don't care for him".
I tell our day shift nurse I have brought Michael's morning meds. She explains it's hospital policy to have the pharmacist look at the meds to determine if they're OK to be administered. I retrieve the baggie the meds are in. The nurse grimaces. She says she'll check with the pharmacist. Barry and I look at one another. We know we'll give the meds. The pharmacist arrives and tells us very kindly she can't approve because the meds aren't in the prescription bottles.. We nod. I return the baggie to my purse. She leaves. After a lot of prodding Michael wakes up briefly. We give him his meds.
The neurologist arrives. She tells us she did a fellowship under Michael's neuro. She's confident her former professor will do whatever is necessary and she doesn't want to introduce any other variables into the mix. We thank her sincerely. One more MD to go and we're out of here!
The nurse tells us the annoying hospitalist won't discharge Michael until he eats some soft food and is much more awake. Maybe two hours more. It's now close to 1:30. The plane arriving with my Mom and brother is due at 1:40. I receive a text from my brother. Their plane is being diverted to Las Vegas. He thinks there's some kind of police action by the airport. We turn on the TV. Sure enough. There's a guy with a high-powered rifle on a fourth floor building in the flight path. The FAA has diverted landings and won't allow take-offs. I contact Meaghan who's been waiting in the cell lot at the airport. She's tired, agitated, annoyed. We all are. In our powerlessness, we all have a good laugh at my brother Gary's expense. We know it's been a long, long day for him as Mom isn't the calmest traveler. They'll be sufficiently shocked when they get here that their day wasn't the worst day. The SWAT activity ends, Meaghan sees planes on the runway and heads to pick up the visitors.. We plead with Michael to wake up and eat a pudding and some applesauce. We show the nurse the empty containers. He is not tempted in the least by the tray with broth, a mashed salmon mess and another pudding. The tray is taken away by a kitchen staffer. No need to explain why it remained uneaten. "PLEASE Michael you have to wake up so we can get out of here!" When he says, "stop bothering me", I feel like he IS waking up and is very annoyed with us. This is good. He takes a walk with his nurse proving he can remain upright for a few minutes. The surgeon who stapled Michael's head comes into the room. He's another jovial character who I immediately like. He assures us the wound is only about a quarter of an inch deep, and yes, that head wounds bleed profusely. We make arrangements for an office visit to remove the staples in ten days. The hospitalist releases us. Perfect word choice.
The transport team member arrives promptly. We exit the hospital at 3:30, just moments after our visitors' plane lands. We'll beat them home. Meaghan will fill them in on the way. It will be a different vacation for my brother than we envisioned. That's how it goes with epilepsy.
We arrive home. At this point, we're hopeful Michael will be back to his old self tomorrow or the next day. At this point, we don't know how wrong we are. At this point, we're happy to see our son and his dog reunited. At this point, we're grateful to be home. At this point, we're thankful the injuries weren't too serious, and we're feeling blessed by the love and support of family and friends.
At this point, we're bruised and scarred but not beaten. We are not beaten, epilepsy. We are not beaten.