Emergency Room Elephant

Let’s be clear. Without modern medicine, we would have buried our daughter ten years ago when the first of the terrible seizures she has had to live with since struck. This is no diatribe against individual doctors and nurses, but it is a cri de coeur against a system which stifles the practice of medicine and reduces doctors to automatons controlled by hospital administrators and insurance companies.  Get ’em in, treat ’em, and get ’em out…fast.

So many of you reacted wistfully to the idealized sculpture of the Country Doctor I posted in the Weekly Photo Challenge noting that this hands-on, nurturing model of a doctor is gone. Long gone. I am the last person to romanticize what medicine was like 100 years ago before antibiotics and anesthesia. Women died in childbirth, polio crippled, scarlet fever blinded. Return to that? No, thank you.

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But somehow among all the life-saving advances in medical technology, the crucial doctor-patient relationship has been trampled, nearly fatally. None other than the Wall St. Journal describes the dismal state of affairs in medicine today.

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In an essay excerpted from his new book, “Doctored: The Disillusionment of an American Physician,” Dr. Sandeep Jauhar writes:

“When I look at my career at midlife,  I realize that in many ways I have become the kind of doctor I never thought I’d be: impatient, occasionally indifferent, at times dismissive or paternalistic. Many of my colleagues are similarly struggling with the loss of their professional ideals.”

He goes on to describe the frightening decline in physician morale and the negative impact this malaise has on the most important face in medicine: the patient’s.

Meet our daughter, Jennifer.

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Why the pink helmet? To protect, theoretically, against the terrible seizures which strike without warning, out of the blue, sending her crashing to the floor like a tree which has just been felled. In this picture, she has pushed it up a little bit off her forehead because it is so very hot and her skin grows irritated. You can imagine. She shrugs off the looks….rarely unkind, but always there…..and really, it is the least of her burdens in living with this terrible disease. The worst of it has been the loss of her bright light through brain injury. Repeated seizures will do that.

We live under the Sword of Damocles dreading the phone call informing that she has had another seizure and is on her way to the ER. Thursday was one such night.

Jen was getting ready for bed and had taken her helmet off when it hit. The result was a hideous “L” shaped gash to her forehead and a laceration of her eye. The ER stitched her up, scheduled an appointment for the next day with an eye surgeon, and sent her home.

The next morning while standing in the cafeteria of her residence, she seized again plummeting, helmet-attired, face-first into a table. By the time I got to the ER, they told me they were admitting her. Huge sigh of relief. Admitting her until they received the scans of her injuries and saw that, in addition to the new gash on her chin, her jaw was fractured. A transfer to the big teaching hospital in our city was necessary. And off we went, she via ambulance.

And there they treated her over eight long hours.

First the triage, then a parade of specialists. In comes the oral-maxillo MD who carefully and precisely stitches up the eye injury. Next the ENT MD to explain about the fractured jaw. Then the neurologist: Jennifer, who is the President? Can you touch your finger to your nose? Can you spell ocean? Can you tell me your mother’s name?

Each did their job, in and out, but not one doctor stopped to look at her as a whole entity – the human being – horribly injured by potentially deadly seizures which may – or may not- be ramping up for another out-of-control cycle. Seizures are most terrifying in their unpredictability.

That’s where I’m reminded of the Indian parable of the blind men and the elephant. Our specific ailments are being tended by specialists, yet the person, the individual human being in that bed, is invisible. She is a rope, a pillar, a tree branch, a hand fan. No one sees the elephant. And so it is easy for the attending physician to face me and tell me she cannot be admitted for even an overnight observation. I am to take her home. The blind men have spoken.

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The nurse tells me they’ll bring Jen down to the sidewalk in front of the ER door. I weave my way through the hospital, into the cavernous parking garage, loop around the entire hospital complex to get to the ER door, and no Jen. I get out to look for her, an EMT tells me there’s a lady in a wheelchair in the waiting room. And that’s where I find my daughter. Sitting alone in a wheelchair. Bloodied hospital gown still on her. I rush up to steady her and help her into my car. Somebody sees me gathering up the back of her hospital gown and offers to help. He is appalled at her face. I say you must have to be hurt a lot worse than this to get a bed here. And he pulls up his shirt and tells me he’s been waiting since 2:30 that afternoon to see a doctor. His entire abdomen is bandaged; he had surgery two days ago and is in pain. He is scared and exhausted. I just want to get away.

And the beat goes on in my crazy little corner of the world. I am learning to prepare variations on gruel for the six weeks it will take Jen’s jaw to heal.  And to clean and dress a head wound. And wonder what happens to all those other elephants in the ER.

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Smoothie, anyone?

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About Silver in the Barn

Life in a 1915 farmhouse in Central Virginia. Blogging about whatever happens to catch my fancy - sometimes nonsense, occasionally not.
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105 Responses to Emergency Room Elephant

  1. I hope Jen’s recovery is speedy. So sorry for you both to have to endure the craziness that is the state of our ER’s.

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  2. I wish I had a solution. All I can offer are my prayers for a speedy recovery, too. And a long interval between this incident and the next. Courage to you.

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  3. Dianna says:

    Aw… what a sad state of affairs in our country’s medical system these days. Your Jen is a beautiful young woman; I’m so, so sorry that she (and you) have to undergo all these challenges. I, too, wish her a speedy recovery. Will be thinking of you both!

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    • In a way, Jen is one of the lucky ones because she has family. There are so many others, especially the mentally ill, who bear the brunt of this system in the most cruel of ways. We should be ashamed. Thank you, Dianna, for your kind wishes.

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  4. kristieinbc says:

    Your mother’s heart shows in every word of this blog post. I’m sorry for you. I’m sorry for your daughter. Such horrendous pain, and not just physical. I know this pain. I have a daughter with two serious auto-immune diseases. There’s nothing to do but watch, love, support, and try to cling to the faint hope that someday, somehow, there might be an answer.

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    • That’s right, Kristie, the physical pain would be bearable. To watch and wait for the next incident and its aftermath is really just too much. I, too, cling to faint hope. Thoughts and prayers with you and your daughter. This is such an awful boat to be in together.

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  5. Mary says:

    and yet Jen continues to smile…
    I cannot believe that a hospital would not look at her full history and want to keep her overnight and that a waiting patient is helping versus a hospital employee! Our elderly are overmedicated and our mentally ill are swept away but if you want to have your face and boobs reconstructed you can lay in luxury in the pent house level ( I imagine). Sad times!!

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  6. nrhatch says:

    Wow! Just wow! This post is an eloquent plea for long overdue change. I agree, I don’t want to go back to the state of medicine 100 years ago, but your description of the blind men dealing with an elephant is apt.

    Your strength and your daughter’s smile provide perspective for those who are dealing with petty concerns. Best to you both.

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    • Of course my strength regularly collapses as does her smile, but today is a good day, Nancy. Your observation about petty concerns is so true although, honestly, it would be so nice to get upset over the state of my manicure. Oh, to have such problems!!! Thank you.

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    • nrhatch says:

      I saw this quote elsewhere and it seemed like something to share:

      “A stable mind is like the hub of a wheel. The world may spin around you, but the mind is steady.”

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      • An excellent quote and one I will hang on to when I go all “wobbly” as Margaret Thatcher would say!!

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      • nrhatch says:

        Life does have a way to throw us off kilter at time. Make sure you get plenty of sleep, and keep your sense of humor at the ready.

        After my dad died, as I was helping mom to recover from spine surgery, life got a bit “wobbly,” and I wrote this post/ poem to share my favorite coping strategy:

        http://nrhatch.wordpress.com/2012/08/05/my-lifes-become-topsy-turvy/

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      • My life’s become topsy~turvy
        Straight~aways are now curvy

        Bedtimes shifted, meals rearranged
        All these changes seem so strange

        The familiar has given way
        A new landscape fills my day

        Inside out and upside down
        Everything is turned around

        Things have shifted, gone astray
        My old life is M.I.A.

        When shifting sands send us sprawling
        And on all fours we’re slowly crawling

        Some bawl into soggy hankies
        Others reach for their blankies

        Steadfast, comforting, full of hope
        These remains of the day help us cope

        Me?

        I retire, covers over my head
        Lights out . . . it’s time for bed!

        Liked by 1 person

      • Love this and have to share in case a reader dares to not click on the link you provided. Such a perfect description of the daily goings-on and I could not agree more. A good night’s sleep transforms me from Nurse Ratched into Mom. XXX Thank you!

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      • nrhatch says:

        Glad you enjoyed, Barbara. Here’s to kissing Nurse Ratched farewell.

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  7. vannillarock says:

    Despite all the pain and fear which all those strangers brought, she has a beautiful smile for you and your camera, Barbara. A heart-felt post, which sadly we can relate to, (if not first-hand) in all parts of the world. Wishing her a speedy recovery. Anne

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  8. carolwallace says:

    This is what courage looks like, Barbara — facing up to the unbearable and making something out of it that might be helpful or comforting to somebody else. (And, yes, using your rage as fuel.) I admire you more than I can say.

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  9. mckinneyjodi says:

    Oh Barbara, how this post touches me on several levels… First as a mom – compassion and heartache for what you are going through daily just wanting to love and provide the best care you can for your daughter. What broke my heart the most was your statement of Jen losing her “bright light.” I’m so sorry! I can’t even begin to imagine what you go through.

    Secondly, healthcare is the business I am, and I get where you are coming from – and the blind men and the elephant is a great analogy of what is happening. As an industry, we are striving to change healthcare delivery to patient-centered care, bundled payments, and accountable care. It is a long, arduous battle.

    Hang in there my friend. You are greatly admired, and I am deeply touched by your post.

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    • And, Jodi, it is so important to me not to trash the individuals working in medicine. It’s not their fault they’re trapped in this system. The medic in Jen’s ER room was almost in tears when she saw I had to take Jen home. And over the years Jen has been sick, I’ve had the most wonderful experiences with nurses and, yes, even some doctors. There are real heroes in medicine, working around the system, doing their level best to take care of patients in spite of having one hand tied behind their back. Thank you, Jodi.

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  10. Oh my, she is lucky to have you, Barbara. And you her, I have no doubt.

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    • She is lucky, Philip, because she has a back-up system in the form of her parents. I worry about all those that don’t. Casualties abound in the greatest nation on earth. And I have no answers either. So good to see you out and about a bit now, and hope that life in Cambodia is going better for you.

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  11. dorannrule says:

    Oh Barbara, this is just such a frustrating story. I can see Jennifer is so beautiful and it’s a horror for her and to those who love her to have to go through the fearsome events in her young life. My tears and my hopes and my wishes go out to you and your family in coping with this. I have just a little understanding since one of my favorite friends suffered a brain injury, had a growth removed, then got a titanium plate, was the victim of seizures – the works. The most we could do outside the family was hold his hand, listen and love.

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    • It is a horror, Dor, to watch her being chipped away at and feel that something terribly inevitable is coming. Does that sound overly dramatic? It really is how we feel….and she smiles because she has no clue the peril she is really in. She deals with each injury one at a time and I try to do the same – pushing the fear down as best I can. Thank you for your kindness and support.

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  12. Pat S. says:

    I have read the other comments and there isn’t much that hasn’t been said by your band of supportive friends. You know I am one of them and if you need me…any time, any place.

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  13. The combination of first world capability and third world organisation is unbelievable…of course your daughter should have been kept in for observation…of course she should not have been left alone in a hospital gown to be collected like a parcel……it is a shocking indictment – not of the staff, who have to work with the system, but of those with political responsibility who allow such a system to exist.

    My husband has had a serious auto immune disease for thirty years…each attack could finish him off, and only speedy and accurate treatment when he has an attack can save him from further damage. We keep smiling too, to keep the bugaboos at bay.

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    • So you, too, live under the Sword. I am so sorry to hear that your husband’s illness is this serious. Bugaboos, be damned, we will soldier on!! I will add the first phrase of your comment describes the situation brilliantly and succinctly. I’ve come to expect nothing less from the Costa Rican Sage. Thank you, Helen, and my heart goes out to you knowing how hard it is to be the one on the sidelines.

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  14. Sue Mayo says:

    I am so sorry for all of you. This is a living nightmare. Our healthcare system is a royal mess. When I think of all you have been through it makes me mad as a wet hen. The day of treating the whole person is in past and I don’t think it will ever change.

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    • I don’t think it will change nearly soon enough for any of us….although those who can afford it are doing that concierge care which I think gives them a more hands-on treatment. Not sure about that, but that’s my impression. It’s good to read that there are movements within the profession to make changes but it’s taken a long time to get here, and it’s going to take a long time to get out. Hugs from Nurse Ratched!!

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  15. Diane Ahlberg says:

    Well Barb I could go into a long dissertation but like you been there done it- get her in get her out! Or if you are being admitted you may wait 8/-12 hours you know shift change and all that , meanwhile the patient is starving
    Family getting grumpy with every right.
    Drop off and pick up is a disaster there- you take your own life in your hand there. I am just appalled that she was left there first alone and second in that condition .
    Dear Jen I wish you a speedy recovery
    And Barb and Roger the strength to make it with your sanity intact
    Xo

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    • Appalled but not surprised, right? I know you, of all people, know this scenario all too well. Jen, too, was starving and we had to wait for the interminable clearance to eat. Thank goodness for the medic who brought her jello, pudding, and applesauce. Oh, and too late for the sanity part, Di, but we’re faking it pretty well. LOL! I’ll share your wishes with Jen.

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  16. Parnassus says:

    Hello Barbara, What an upsetting experience for you and your daughter, and what a relief that the emergency part is over for now. When I still lived in the U.S., I had occasion to frequently visit the brain-injury unit of a nursing home. Many of those people had no one to visit them, so I made time for a few extra greetings, and was always impressed by the chipper attitude that the patients were able to maintain. And although your point is valid about health care professionals, most of them did show genuine compassion and concern.
    –Jim

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    • Absolutely true, Jim. It’s important to remember that working within this heartless system are people who got into the profession to serve, heal, and protect, and they live up to that every day. I spent Christmas Day in the ER with Jen after another bout of seizures. I cannot tell you how moved I was to be surrounded by the Christmas spirit in that hospital. They had decorated, doctors were wearing antlers, nurses with Santa hats, you get the picture. And I thought how wonderful these people are on so many levels. It’s the system that sucks the passion out of some of them. And the patient then pays the price.

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  17. Admirable strength through such unnecessary and extended ordeals. For almost 26 years, I know, first hand, the challenges and injustices within “the system.”: Yet without “it” and its flaws, I wouldn’t be here, either. Like so many things in our world, we find ways to work with the good and the not so good.

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    • Hello Eric. You make such an important point. As flawed as it is, still lives are saved, right and left and with admirable efficiency. Somehow we need to find a way to better care for the people in between the extremes. Not sure what the answers are to such a complicated question, but seeing the issues brought up in the media, as in the WSJ article, is surely a step in the right direction.

      Liked by 1 person

  18. Betsy says:

    Jen is beautiful! And after all that still has a smile on her face.I hate that now patients have become “numbers” and there is no bedside manner or compassion. Hopefully Jen will have a quick recovery.Sending prayers and hugs!!

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  19. To an outsider, US lack-of-healthcare is a resounding indictment of rampant elitism. I can only say, my heart is with you all.

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    • The link to the WSJ article points to many of the contributing factors to our current dismal state of affairs including – surprise! – insurance companies. It took a long time to get this bad and, sadly, will take longer to dig ourselves out. Thanks, Helen

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  20. M-R says:

    You are an extraordinary woman, Barbara. Many would have gone to pieces years ago and been unable to cope. And there’s Jen, smiling and happy – because YOU know how to care for her and keep her functioning. Which you will do forever.
    The Oz health system was once fairly wonderful; but now we have a government doing its best to reduce it to precisely what you write about.
    That doctor is to be thanked profusely for admitting what he did …

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    • You bring up an excellent point which hasn’t been touched on – the doctor himself – who was brave enough to open his kimono and tell the truth about the malaise in his profession. No false modesty here, M-R, I am far from extraordinary – only doing what any mother would do in the same circumstances. And not always very cheerfully, believe me. In any case, thank you!!

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  21. de Wets Wild says:

    The insight you’ve given Barbara rings so familiar, seems there’s no difference between healthcare in the US and here in South Africa. The only really attentive care is to the medical bills, not the patients. Sending positive thoughts to you and Jen especially!

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    • I am surprised to read this because I naively had the idea that most first world nations must have far superior health systems to ours. It seems not, though. Thank you so much for positive thoughts – we can certainly use them.

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  22. Barb, you are so brave to tell Jen’s story to the world, but that’s what comes out of frustration. Healing a jaw definitely teaches patience – I learned that first-hand with my daughter and consider it one of the most trying parenting situations of my life. Smoothies were our savior: peanut butter, chocolate, banana and yogurt kept her happy. I’ll put you and Jen in my prayers.

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    • Oh no, Alison! It’s only been a week and she is already just so over it. I am doing my level best to come up with creative meals for her and hoping that she can see the light at the end of the six week tunnel. Did your daughter have to have her jaw wired? They can’t do that for Jen because of seizures so we have to hope that it heals properly and with correct teeth alignment. So far, so good. Thank you, Alison

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  23. dorothy says:

    Prayers, love, and patience to all of you. At least you are aware of our healthcare shortcomings and have stepped up to the plate to look out for Jen. Think of all the people who have no advocate. Thinking of each of you every day and know that friends help you along the way with their support and prayers. Jen’s beautiful smile helps make our day brighter.

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    • I do think of those people all the time and wonder how they can possibly navigate this system successfully on their own. Thanks for all your kindness. And I send the same to you. We should start a group “Nurse Ratcheds Anonymous!” That’s an NRA I could support.

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  24. It’s not the same tragic circumstances but I believe there is a similar situation in education. I know many teachers who are not the teachers they wanted to be because they must work within the ‘system’.
    Reading your story and from what I have experienced myself, I also wonder how those who have no one to advocate for them ever survive the health system. Things are not nearly so bad here but as M-R has already said, we have a government hellbent on trying to make it so.
    You are a remarkable mother, truly. Sending you all the positive vibes I can. Hang in there.

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    • MoSY, you are so right…education is another disaster. Just today listened to a fascinating interview which I suspect might worm its way into a future blog post. “Excellent Sheep” and why you don’t want to send your kids to the Ivy League. Here’s hoping they don’t muck up your health care syste too much, too soon.

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  25. Thom Hickey says:

    Wow! Some scary roller coaster ride. Maintaining humanity is a real challenge for so many clinical staff. I saw a lot of this in my dozen or so years as an investigator of complaints into the UK health service.

    Hope Jen recovers well. Regards Thom.

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    • Thanks so much, Thom. Wow, I can only imagine what you must have encountered as “investigator of complaints!” The mere fact they need somebody with that title tells us a lot. Jen is doing better and you are so kind to think of her. Such great people out in the blogosphere.

      Liked by 1 person

  26. Jane says:

    Oh, Barbara.i am so sorry that you and Jen have been treated this way. My heart goes out to you while I tamp down the anger I feel at such a broken system. My best wishes for a peaceful recovery and improved treatment going forward.
    Jane

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    • Thank you so much, Jane. Jen is okay because she has a family while so many don’t have that support system for whatever reason. I just keep coming back to feeling that we should be ashamed of ourselves for how we treat our vulnerable. Jen is feeling a little better today and we’re one week into the six weeks of gruel for the fractured jaw. UGH.

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  27. Oh, Barbara, this is such a heart-breaking situation – for everyone involved. I wonder whether there’s a holistic practitioner (with MD credentials) who might be able to help her control her seizures.
    I know a physician who retired (early) from a medical career summing it up with this: “Medicine has been the greatest disappointment in my life.”

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  28. Dear Barbara, My heart comes out to you. I’ve been reading the comments, and like Pat, can not add much that others haven’t already offered. I”m so glad you have a bright and shining circle of love and support. I hope that Jen’s injuries are healing well, and that you are finding ways to take care of YOU. Please remember to breathe. And to smile 😉 Jen is so beautiful, and she is so very fortunate to have such loving and resourceful parents. Thank you for sharing this story. I know you are hoping it makes a positive difference in how we care for the ill and injured everywhere. Hugs, E

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    • Dear E., thank you abundantly from my little corner of the world. It’s rare that I post something on Jen’s situation, but I was so angry and upset, not just for her, but for all the others that can’t protect themselves from the very system that is supposed to care for them. Yes, I need some deep breathing for sure. Thanks for your friendship and support, Barbara

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      • Jen, I feel those same feelings so acutely watching how my folks have been treated through their recent difficulties. There are some wonderful individuals, but the decision making process for how individuals are treated is skewed against humanity and compassion. We had similiar experiences leaving St. Francis right there near you- no staff to help transfer Mom into a car for the first time since her stroke. So many of the staff have just hardened their sensibilities to what the patients are actually experiencing. But our hearts are raw, and our sensibilities and empathy acute. You could be nothing but outraged at how the “teaching hospital” where Jen was cared for treated her, and you as her care-givers. I hope that the radiant smile in her photograph has become the norm, in your love and care- and that her healing progresses with no more seizures. My trips your way will be curtailed for the next few weeks as I finally head out to the other coast 😉 for a long overdue visit. But I’ll keep you three in my heart. And yes, breathe through it. Hugs, E

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      • Elizabeth, wishing you a wonderful trip to see your granddaughter and we MUST plan a get-together, no matter how impromptu! Obviously, my plans for a blogging party at the Barn are curtailed….for now. Things often have a way of improving on a dime. Big hug to you. Enjoy your trip.

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      • Its always wonderful when things improve on a dime, and even better to know that potential is always there. I was there Monday and was thinking of you- but there was no time to meet. It was nearly dark when I left town as it was. A very full day… It will probably be after the 21st when I get back again. We would love to host you two and Jen if she is up to traveling this far by 9/20-21. She would enjoy our little “Boutique” and lunch on the Creek. Will look forward to seeing you soon, Much love,
        E

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  29. Sheryl says:

    I totally agree that the doctor/patient relationship is a key part of high-quality medicine. A fractured jaw does not sound like fun. Hopefully the 6 weeks will pass quickly.

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  30. Jen is blessed with a wonderful mother. Naturally, you are having some bad days, but you seem to have the strength to carry on and be there for your precious daughter.

    Canada’s health care system may be considered better in some aspects, but I still feel sometimes I’m getting the bum’s rush when I see a doctor. More patients in, more patients out, more they can bill MCP.

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    • I’m sure each health care system has its pros and cons, and normally I can navigate through the system fairly successfully. This latest incident was just a “perfect storm” of inattention to the whole patient leading to a really bad decision. Thank you so much, Jennifer, for your support!

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  31. I am so sorry that your lovely, Jen, is having these medical problems and hope that she’s better soon.

    We have seen the gamut in doctor/patient relationships. We have a very caring doctor – our family physician – who does take forever to get into the room to see you. But he also takes an enormous chunk of time to chat with you – professionally and generally. Years ago, my husband went to the hospital for an operation to remove kidney stones. The specialist who treated him stood in the doorway of Dave’s hospital room, asked how he was doing, and then took off moments later lickety split down the hall. We laugh about it now, but I would NEVER wish that kind of medical doctor on any one.

    Wishing Jen, you and your family the very best.

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    • Many, many thanks, Judy. Re: Dave’s kidney specialist. It is always a bad sign when they won’t even come into the hospital room. That guy needs some serious bedside manner training. Lucky you to have a doctor who is not so harried and over-scheduled that he doesn’t even recognize you. Definitely something to value.

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  32. Firstly, so sorry for you all re the stress and worry, how tough your daughter must be, and how does she look so cheerful?
    Secondly, I went to a meeting once (cancer) and one of the young surgeons loftily announced his job was to cut patients up, not to speak to them, or words to that effect. I wanted to shoot him, arrogant bastard.
    And thirdly, the medical system is what it is, a collection of disparate specialisms. If only we could treat holistically and not different parts of illness. It doesn’t fit with western thinking though.

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    • I have often wondered were I to bring Jen to Taiwan, for instance, how her “treatment” would change. One of my blogging friends has suggested acupuncture. I am going to pursue that avenue. Speaking of medicine, I hope your foot is much improved.

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  33. Barbara Stevens says:

    Oh Barbara…How mistaken was my image of you and your life in that grand house with the lovingly tended gardens and two little white dogs.
    My heart goes out to you, your husband, and your beautiful Jennifer. Prayers for you.

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    • Hello, Barbara. Interesting when the mask slips and a bit of the real person is revealed, isn’t it? I really enjoy my blog and carrying on with my Instagram friends as a great source of relief and diversion from daily pressures. I have it so much better than so many others and I know it. And I accept your kindness and prayers and friendship with an open heart. Thank you.

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  34. Joanne Butler says:

    Dearest Barbara, I only today was made aware of this sad situation
    surrounding you and your family. Ann brought it to my attention this morning and I was truly taken aback with the unthinkable treatment you and Jennifer received at this hospital. Leaving your daughter clothed in a blood stained hospital gown in a waiting room is more than unacceptable. I would have been outraged at this show of behavior. This hospital needs to teach compassion for its patients and learn to respect the human mind as well as the body. Your courage and strength reminds me of a situation that plagued my family many years ago. Some day I will share this experience with you. For now, I have all of you in my thoughts and prayers for Jennifer’s quick recovery. Bless her beautiful heart for still smiling under these difficult circumstances. She is beacon of light to those who also suffer from such debilitating diseases.
    Prayers and strength to all of you,
    Love, Joanne

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    • Hello Joanne, I so appreciate every word of your heartfelt message and am so sorry to hear that you have had similar situations in your own family. Will any of us ever take health for granted again? On a more cheerful note, Jennifer is feeling better and is almost through week two of the soft-food diet for her fractured jaw. My Cuisanart and blender are getting their workout. Blech.

      And iris need to be planted and hyacinth bean vines need to be harvested and the beat goes on, right? I feel fortunate to have good and caring friends like you, Joanne.

      Love, Barbara

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  35. bkpyett says:

    Dear Barbara, I do feel for you and Jen. I worked in a special school where many of your students suffered seizures. It is such a horrible condition to adjust to. I do hope medication can help.
    When I worked in Switzerland I saw the results of the failures of brain surgery, so don’t have wise words to say…. bless you all! I have finally worked out how to manage some of my ‘follows’ and now receive e-mails from you! Most interesting post, it’s a pity about the elephant treatment!

    Like

    • Interesting. We investigated surgery but the neurosurgeons say that there is so little “reserve” in her brain now that surgery would leave her “compromised.” You know what that means, right? Jen handles this very bravely. I don’t think I could do the same in her shoes.

      Like

      • bkpyett says:

        In Australia there is talk of marijuana helping seizure patients, so there is a big shift wanting to legalise it. For some using the drug, it has reduced seizures dramatically.
        Have you heard anything like this?

        Like

      • Yes! There was just a one hour documentary on CNN about it and how it is helping those with epilepsy and other neurological problems like MS, for instance. And our government is doing everything humanly possible to throw up roadblocks towards research. I may have to moved to Colorado!!

        Like

  36. I personally believe that the reason medical care has become so impersonnel is due to the “root of all evils.” I hope and pray for Jen and her healing. Her complete healing!

    Like

    • Oh yes, so much of this awful patient treatment is dictated by the constraints of the insurance companies. Get them in and get them out! Thank you for your so kind thoughts and prayers for my daughter, Priceless Joy.

      Like

  37. Paula says:

    Ohh Bárbara… Everybody does their jobs but not the Job of have humanity. That’s why we surprise ourselves when someone is educated, helpful, have well manners, etc…….. Those things have to be the regular things not the other way around. I think the world is up side down.

    Like

    • You are so right, Paula. They do their jobs, paying attention to their part of the body, and ignore the entire human being in front of them. And I agree, it is a surprise to meet somebody who behaves as you describe. The world is upside down and it is up to us to change it in our own individual little worlds. And I love seeing you here, Paula. Thanks for popping over from Argentina.

      Like

  38. joslyn says:

    From a mother to a mother, my heart goes out to you. My prayers goes out to Jen wishing her a speedy recovery and to you for your strengh and courage.

    Like

    • Ah, Joslyn, I thank you from the bottom of my heart for this message. One day at a time, we take it. It’s been two weeks now since the jaw was fractured and I am becoming a maestro at the blender and Cuisinart. I will never serve another puree in my life when this is over with!! XXX

      Like

  39. cindy knoke says:

    Oh this resonated with me, and a lot of other people apparently. Thank you so much for posting. My husband had an orbital blow out fracture of the eye with a collapsed sinus. After determining through a ct scan that they couldn’t send operate until the swelling resolved, they elected to discharge him the same day with his eye on his cheek and his sinus visible. They thought the visible sinus was interesting and showed it to me. He couldn’t walk. I left the ER. With me gone they had to admit him so he spent the night and I took him home the next day.
    He was fractured, but so was the medical system as you so accurately point out. Don’t even get me started on the mental health system I was a therapist for 27 years. It is even worse. Much worse.
    I can only imagine the stress and worry you must face daily for your daughter.
    You have my empathy, respect, and admiration, and so does your daughter.

    Like

    • Cindy. Oh my word. We should hang our heads in shame that it’s come to this. I cannot tell you how many times I’ve thought to myself that I should have just WALKED OUT of the ER. And I think I will next time. How ridiculous is it that we even have to contemplate abandoning our loved ones in order to force them to take care of her. And, Cindy, I’ve not touched on this subject in my blog, because living it is enough of a trauma, but I know more, much more, about the mental health system than any one person would ever want to. For it to take Creigh Deeds’ son to stab his father and shoot himself just to get the attention of the VA legislature is sickening. Maybe someday I’ll be brave enough to write about my own experiences battling this system but I don’t have the fortitude for it right now. Thanks for your compassionate reply. I can tell you’ve been in the trenches too.

      Like

  40. Pingback: Snap, Crackle, Crunch | Silver in the Barn

  41. joannesisco says:

    This is my second time reading this – I don’t know why my *like* and comment are missing from the first time. My heart broke for you a second time … the fear, the concern, … and yes the anger too.

    In so many ways, I think mankind has peaked and has started its decline backwards. You did such an excellent job of highlighting one of the issues with the medical system today … the very myopic, one-dimensional side of treatment. Woe to those who have a chronic condition 😦

    Like

    • I’m sorry, Joanne, that WordPress did its thing to your first comment and like. An eternal mystery how these things happen. And you know, I agree with your statement about peaking and now declining in regards to our civilization. I read a lot of history and there are so many parallels to our time and Ancient Rome, for instance, that it is somewhat terrifying to contemplate. The fact we take such wretched care of the neediest people in our society is just a shame. I worry so what happens to people who don’t have a mother, right? They’re the ones that end up under a bridge somewhere. Thank you, Joanne.

      Liked by 1 person

  42. Outlier Babe says:

    Barbara, there’s nothing to add that your post didn’t already say, or that hasn’t been said better by others before me, and I’ve already passed on my message to Jen via our exchanges elsewhere. What I didn’t say there was “Sorry for what YOU went through that night, Barbara.” And what you will continue to go through. For some of us, life is really a difficult thing, and each time someone tells me about God opening a window, I want to push them through it–how about you?

    Still happy about God’s gifts, though. I think we’re built that way: To have the capacity to appreciate whatever there is to appreciate. Thank God (Yes: Literally 🙂 )

    Like

    • Outlier Babe says:

      Oh–it’s YOUR post–I forgot where we were, since we’ve been in both, this morning (blush).

      Barbara, due to a personal experience which would be meaningless and scoffed at by anyone else, I have a solid (most days) belief in an afterlife in which Jen will be free of suffering, and happy. One would think this remarkable belief in a miraculous future life on a higher plane would result in a constant, giddy happiness down here on the ground It actually has very little impact (in a life filled with air disasters). We are creatures of this plane(t), and must live in it, for now.

      I agree with your philosophy: We may as well look for joys–every tiny one we can spot. I believe we come pre-programmed with the capacity to do so (look at children). Which reminds me: I baked up that chocolate chip cookie dough, after all. I added some quinoa and sunflower seeds to pretend it was healthy (ew!! gross!!), and now, I believe it is time for a post-breakfast “poor lil’ me–I hurt my foot, I did”–dessert.

      Like

  43. Outlier Babe says:

    info@hovding.com

    Jan 12

    Dear Hovding Folk,

    Just wondering if a version could be triggered by any adjustment to particular angle. For epileptics with poor seizure control, your helmet might be useful–and less hot, uncomfortable, and embarrassing than other choices–but only if it could be automatically triggered by a fall from the perpendicular. One would have to be able to shut this trigger off manually to recline while watching TV, whatever…

    Thank you.

    –O. Babe

    Hi O.Babe

    The current version of Hövding is for cycling only and should not be used for epileptics and falling disorders. We have seen a lot of interest from the market for a helmet for epileptics and it is something we will be looking into in the future.

    Regards Johan

    Johan Bresky
    Hövding Sverige AB
    Grimsbygatan 24
    Hullkajen
    211 20 Malmö
    Phone: +46 40 236868
    Email: johan.bresky@hovding.se

    Hello back, Mr. Bresky (Johan),

    Thank you for your kindness in taking time from your busy work and life to respond.
    It is excellent news that your company is planning development of a helmet version for epileptics. I will pass this information on to my friend, the parent of an epileptic child who is frequently injured in falls.

    Thank you again, and of course, best success in the new product’s development!

    –O. Babe

    Like

    • Babe, I am so touched that you would do this. I hate that Jen has to wear that awful helmet and there have been times it hasn’t helped at all in a fall. This most recent fall when she fell forward, for instance, into a table and fractured her jaw among other injuries, it did nothing. It is just a terrifying situation, really. If she is standing when the seizure strikes, she falls exactly like a tree – full-force into whatever might be in her path. The potential for disaster is always there, hovering over our heads. I can’t tell you how much I appreciate this. You remind me to research a bit what new developments are out there for head protection since we bought her most recent helmet. XXX

      Like

      • Outlier Babe says:

        Hearing about Jen breaking her jaw breaks my heart. Barbara, the boy up the hill from me, growing up, wore a football helmet daily, complete with guard. It may not have been attractive, but surely that guard prevented facial fractures.

        Re: Hovding, I’m no saint, Barbara. It is simply that I was looking into bike helmets. I have Meniere’s–from the Behcet’s–and shouldn’t risk bike-riding at all. But I miss it. I’d like to try again, with a baby bike low enough my feet reach ground at all times (hello leg cramps). I dislike standard bike helmets. When I saw the Hovding, I thought of Jen.

        I sent you the letters so that you can check in on development. You might consider writing an offering to be part of a trial when they have a prototype ready. It can’t be any worse than what Jen is now using.

        For your own research, I wish you the best (and hope you remember to query every support group forum for parents of, and independent adults with, seizures leading to injuries–there have gotta be some, yes?).

        Like

  44. Outlier Babe says:

    Barbara, I’ve butted in again. This is my email: bell.curve.outlier@gmail.com. If you don’t mind sharing an email, I have something to send you that may be of interest related to this post. (If you are not comfortable with that, you can create an email or email alias just for that purpose, or I can place the info here, but that seems…too public.) –O. Babe

    Like

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