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:
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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.
OMG Just think how many more times you would have to go through this if you lived to 180. Modern medicine - or more precisely the PRACTICE of modern medicine might be the reason we can't make it past 150 now.
ReplyDeleteAnd he truly believed this?
ReplyDeleteWell. As the Trailer Park Boys might say, "Oh my fuck."
I so wish I could have been a fly on the wall when the child with the Resident Neurologist badge he got in a box of cereal tried to explain seizures to you. That must have been golden.
Oh my fuck, oh my fuck, oh my fuck.
Keep us posted, oh ye woman of the tiny mother mind which encompasses all understanding and amazement.
Oh and have you ever tried the ketogenic diet? Or (insert drug name)? PLEASE!! Because we and our girls have been hiding under rocks for the past 2 decades. So sorry. Glad you could laugh because it really does get us through.
ReplyDeleteHahaha, yes! He asked me about keto diet, too, and when I told him that she was on it TWICE, in 1995 and then in 2000, he asked HOW LONG? (Just in case we hadn’t really done it for long enough)
Delete"The Resident Neurologist and who neurexplained to me what seizures were and how certain drugs worked."
ReplyDeleteI laughed out loud. Literally.
I'm glad Sophie's getting checked out for overnight seizure activity. I'm sorry that involves neurologists who don't listen or understand.
ReplyDeleteAnd tRump, I'm so thankful I'm not related to him.
I don't even know where to start...as someone who has to DEAL WITH the medical/industrial complex with pregnant mommas and their wee babes, I am SO SORRY for 10 hours of WTF and neurosplaining and jaysus gawd....
ReplyDeleteThen the topper, the Bible believer guy. Issac lived til he was 180 and there's no global warming. Beam us up, Scottie.
All love from Seattle, still a reasonable city with mostly normal humans, I hope
Sometimes one just has to laugh uproariously and use unlady-like language!!
ReplyDeleteBest,
Bonnie
Holy shit.... I’m wrung out just reading this! Hope things get better...
ReplyDeleteI knew when it said Hospital Chronicles that a shitshow was about to ensue... I'm so glad you have a wicked and Dark sense of humor to sustain you thru all this. It is always necessary.
ReplyDeleteIt makes me so glad to read your commenters and see the things people send your way like that delightful photo, as they demonstrate all the kinds of love you and your family have, and I do hope the wonderful community is a comfort during the shit storms. SIFUABS for sure.
ReplyDeleteI think you might be acquitted in a court of law if you went ballistic after so many hours of waiting. What a crazy nut bag system in this, our fabulous FIRST WORLD country. Whatever could go wrong apparently did. I cannot tell you how sorry I am that you and yours have had to endure this HELL HOLE of a health care system.
ReplyDeleteI have had my share of insane, prolonged, hospital interactions wherein people show up and tell me how to manage my Type 1 diabetes which I have managed, daily, for 25 years. Their pearls of wisdom fell to the floor all around me and it was unfortunate that no hospital professional slipped on said pearls and broke their fucking necks.
So sorry you have to deal with this, Elizabeth! What a clusterf*, in so many ways. Sending lots of good thoughts your way!
ReplyDeleteThis post, the layers of stories and the writing is fabulous. I re-read it this morning, this, this sinking validation of trepidation. The Resident Neurologist, the Damage Control, the Hospitalist, the state of medicine, the desire for laughter and God and healing answers and the perspective "of high intelligence (in authority figures) who are not necessarily such believers." The hospital has a cluster-suck zone, just as you feared, you have fallen into an alien land where faith is tested. Is hope walking polished corridors today, wrapped in a white lab coat? My tiny mother mind is concerned about the away-team. Power and strength to you all. Someone already posted my reaction, "beam them out of there, Scottie."
ReplyDeleteWhen I am mad and frustrated, I look down at the floor and think ‘in through the nose, out through the mouth’ as I breathe deeply. I am wondering if you, noticer of shoes, do the same thing? I am hoping that you get the right test, taken at the right time, very soon and that it’s performed very efficiently. Noah, I believe, lived to be like 800 years old. Must be all that healthy sea air and the complete lack of neurologists in the flooded
ReplyDeleteWorld.
I'm trying to imagine your face as the teenage neurologist was telling you what a seizure is. And that quote from the Rump? Wonderful! How's Sophie? How are you?
ReplyDeleteThis is Verna, by the way. I don't know why I'm logged in as Sheila.
I didn’t know I could love you more until “neurexplained”
ReplyDelete