9/11/2020: A Day in the ER
posted 9/12/20 on Facebook
~ The ☀︎H U S B A N D ✻ Update ~and a view of the ER
A long look back at a long day … and of US healthcare
☞ First, thank you to all of my wonderful friends for their warm messages; I am still processing the day, the 9/11 overlay of the day, and trying to make sense of it. I’ll try to fill you in without boredom, drama or sadness.
Here’s the short version: We are home, nothing conclusive was found (yet) things have wound back to the new normal, which, is abnormal.
Here is the long version:
We arrived at the ER at about 2:30 PM, our son drove us into Manhattan, and left after 11:00 pm with NO final conclusion. In my videos it may have looked fairly quiet and not “busy,” but the activity came in waves with new arrivals. There was the ongoing background din of people crying in pain from broken parts, migraine episodes, unknown issues; morphine was administered to a woman who insisted she was “on opiates.” There was the endless beeping of heart monitors in the background, people being transported, people screaming for nurses, nurses glued to computers entering information, mobile x-ray machines coming by.
Observation: it appeared to be a generally young staff, but that might be because I am getting older.
It was a Friday, a Friday night, not the best time to be in the ER. Because of COVID, ONE “visitor” was allowed in with the patient; you could switch places with another “visitor” but you had to wait outside of the building on a bench. My son was outside for over 8 hours trying to keep busy visiting post offices and listening to NPR but there is so much of that one can take. He was on the verge of insanity, as were we, INSIDE.
Not that people weren’t nice or kind or unresponsive, but the environment, the fear of Covid exposure, and the fear and anxiety one carries while in a place like this, all contribute to a terrible feeling.
We were there a long time, not because he “wasn’t seen” but it felt like there was a shortage of staff and there was a tremendous pile of papers indicative of all the folks who were being taken to X-Rays and scans. The ER process is known to be a very slow process.
My husband has a brain shunt which drains cerebral spinal fluid into the abdomen via a tube. (NPH) A year and a half ago, he had a shunt failure, or perhaps it is more accurate to call it a tube failure: it had gotten clogged. When this happens, the motor cortex controlling the legs and bladder gives way. When it happened the first time we went to a nearby ER, then had to wait for hours and were transported in the middle of the night to this, “his” hospital in Manhattan and he was admitted. One of the best in the country.
So, when he neared collapse the other night and his legs wouldn’t move and he broke into a tremendous sweat, we remained calm, it felt like that first episode and we were confident that it could be resolved. However, this felt different. I managed to get my husband from the bathroom to the bed via my wheely desk chair (something that I thought was a great creative solution) and we figured we’d go to the hospital in the morning (9/11). We had a disturbed, anxious sleep, I alerted his doctors and they agreed it was prudent to come in. But the difference was that after a night’s sleep R was able to stand and walk. (note, his walk is never normal). There were No other symptoms. However, living through what we did last time, I figured this was a soft sign of more to come, a warning that the cerebral spinal fluid might not be draining properly and this would happen again.
We took our time, packed a bag, assumed he’d be admitted and assumed he’d be getting a much needed MRI to update one from a couple of years ago. The MRI never happened: and in retrospect that was a good thing because you must have a neurosurgeon or assistant thereof reprogram the shunt. I had forgotten about this and just assumed it would be done after an MRI.
Hours passed, we were hungry, he was starving and has lost a tremendous amount of weight which contributes to imbalance, frailty, fall risk. They wouldn’t feed him-“not with testing going on” waiting for an MRI, blah blah, that never happened, and it turns out NO MRIs, are given while in the ER. Nothing made sense. My son and I grabbed a sandwich and brought one back… the nurse leaving the shift fed Robert. Notice how one hand and the other weren’t communicating.
They began adding people to each bay (How appropriate was our #11 based on this 9/11 day?) and in came a couple, the young man on a gurney with a history of heart attacks. We were divided by a screen, his wife and I struck up a friendship and we couldn’t have looked more different, more opposite in color or age, but we were on the same page. We weren’t going to leave the premises after the 4 hour visitor cutoff without an answer and if I might add, we weren’t visitors, we were caretakers; there was no one to help with bath-rooming, feeding, etc.
**
Don’t even watch, just listen. About five more hours to go.
We were promised a visit from the neurosurgeon. There was none or none on duty. We were promised a visit from the neurologist and it took about 2 hours for her to come down from the hospital: ONE young neurologist in charge of the whole building looking like she would cry. I kept saying that the last time the shunt failed it was the tube. Please admit him.
Blood tests showed nothing, in fact we had just had a large work up privately. The C-T scan showed nothing, not even the tube into the abdomen, nothing appeared to be blocked. But I kept making my case for R to be admitted and it turned out THERE WERE NO BEDS, AND THE NEUROLOGY TEAM DIDN’T WANT HIM ADMITTED AND…their solution was to keep him in the ER ALL NIGHT, in that insane environment, have an MRI TODAY, (Saturday, 9/12) because they wanted to cover their behinds and rule out a stroke. By now it was after 10:00 PM, Evan was outside in a stupor, exhausted, we were inside in half stupor half rage and I said, “NO.” we are leaving, we will make an appointment as out- patient (which I had previously done for Nov 2 with a follow-up with the neurologist) and BYE! A nurse finally came, removed tubes and such, we left the building at 11:00 PM, we got home at 11:30 PM. about 10 1/2 hrs after we had left the house.
We’ve returned without answers, without cures, I have returned without a sense of peace, a facing another week of phone calls for running the lives of my husband and mother.
So why did this happen? It is all conjecture. Did the tube clear, was it indeed the shunt? Is there something else going on, what is causing the massive weight loss? Nothing shows in tests.
I keep getting the feeling that the world is changing radically, that we are shifting somehow and if it isn’t in the realm of radical weather and climate, the shift is in our micro worlds, it is our health.
So I wish good health and clean air to all and thank you again for being a friend.
Thank you for all the Facebook comments.
I’m overwhelmed. Sorry. I have no other words
Damn damn damn. ((Hugs)) waiting rooms are a bitch and 11+ hours is hell! Sending love.
Some of the comments:
Sharon Hershberg
So sorry that the 3 of you had to go through this
Barbara Smith
I am so sorry for the hamster wheel you’ve been on and the fact that you were there for so many hours and know no more now than when you arrived. The system is very frustrating and I feel there has to be a better way. The hospitals are definitely unde… See More
Lanie Zera
This must be hell. Wish I were a neurologist, but can only help by sending love and hope. ❤️ 🤞💪
Ruth Elliott Klein
Omg 😱 ((hugs))
Larry Schechter
At least he is home and hopefully on the mend
Helaine Seelig Bernard
So sorry for all you’re going through. Hope the situation has improved for now and life can get back to the new normal. Know that you are not alone in challenges and that your bravery and resolution gives us strength and a model for how we can handle cr… See More
Alan Goodman
Susan, I’m tired and shaking from just reading your summary of your day. My prayers and thoughts for your husband and your family. Is it Lenox Hill Hospital? When are you going back?
Susan Margulies Kalish
NYPresbyterian Weill Cornell “the best”
Ellen Farina Argall
I’m speechless, dear Sue!!! You are a true saint! 💖💖💖💖💖
Liza DeyPhotography
OMG, I’m SO sorry you all had to go thru all that! You reminded me why I think I’d rather bleed out than go to an ER. If you’re not sick going in, you will be by the time you leave, from stress and exhaustion. And I’ve often wondered why in the *Emerg… See More
Penelope Daner
This sounds horrific; sending you a big hug. ❤️
Jacqueline Sherman
I feel so sad reading through about your experience(s) yesterday in the ER. My thoughts we with you, Robert, and Evan.
Cheri Brown Simerly
Dearest Susan, get some rest. I know very well how mentally and physically exhausting this kind of stressful, worrisome experience is on all of you.
I’m so sorry. I wish I could say something encouraging. I have felt your exact concerns. I don’t know what the future will be for the health care industry. Some things must change. I tell me children to do all they can to stay healthy. I wish I had done better myself. I have your family in my prayers. I hope you can get some answers. God bless you.
Fredrick Gilmore
All the best Susan.
Ellen Farina Argall
Debby Van Enkenvoort
Oh, my word! What an ordeal! Sending love and prayers.
Bert Larson
Amazing what we can do when we .. need to.
Nancy Goldstein
Was worried yesterday & today. Thanks for letting us know. Hoping you get some answers soon. 🤞
Bonnie Foster Smith
What you go through daily astounds me. How you haven’t lost your mind amazes me. That you can still put together coherent thoughts that educate, break the hearts of your readers, and remain standing upright is a testament to your personal strength. Nonetheless, no one should have to deal with all this, even if they can. Too much. Know you are loved more than ever.
Suzanne Muller
So sorry for everything you had to go through. I hope you finally get all the answers you are looking for in the coming days.
Carol Hofstein Pfeffer
Sue Sue he’s in the best hands for care, you and Evan🤲🤲
Maria Pittelli-Gaudiosi
Hoping that he continues to improve and stay well!🙏🏻😘
Donna Haley
As a caregiver you have it doubly hard but I can relate to the long hours in ER’s as complications from my dad’s pancreatic cancer and my mom’s multiple heart issues became more frequent. You have to contend with this damn pandemic at same time. Hang i… See More
Rena Matzelle
Prayers for health improvement 🙏🏻
Cookie Tager
Thinking of you and your family.
Clifford Fee
Carrie and I are shocked by the state of the hospital. . .and hope things work out asap! Lots of deep breathes. . .!
Joan Agines
Thinking of you. I’m here. Contact me anytime you need to.❤️
Clifford Fee
This is crazy! Cliff and I hope along with Nan . . . Take care as best you can! Lots of deep breathes, and please get some sleep! Am also concerned about the hospital conditions, issues, problems etc. Not good. . .and do keep us posted!
Sheila Bogart
I’m so sorry to hear all of this and can only hope that things get better.
Pat Hartnett Stone
I can’t believe how strong you are! I hope you get some sleep tonight. Mqybe tomorrow will be better.❤️
Deborah Lindley
Sue, I have no words… I’m so sorry you guys are going through all this and hitting the wall at the hospital where you should be getting decent diagnostics and treatment… am keeping you both in my thoughts and prayers dear…
Janeen Worrall
Just sending more strength to you both. I hope answers are close by soon and some feeling of normalcy returns for both of you and your son.
Lucy Paige Sheffield
So sorry that you are going through this terrible time. I hope the situation improves. Sending love and hugs to all of you.
Meryl Sacks
Hugs ♥️
Phyllis Clarke DeFonzo
What an ordeal, and you are an angel … hope all three of you get some much-needed rest. Sending hugs to all of you. ❤
Packy Conway
🙏🏽🙏🏽🙏🏽
Pep Pest
All in all frustrating and frightening
((Hugs))
Ellen Barish Zonn
Always remember that you are braver than you believe, stronger than you seem, smarter than you think and loved more than you know 💕
Susan Anne Louer
Sending you a 😼!
Ginny Wong Moore
Again, 🙏🏾🙏🏾🙏🏾🙏🏾🙏🏾🙏🏾🙏🏾
Robin Rosner Kaufman
So sorry nothing was resolved and that you all had to go through this
Joni Silverman Darnell
Hopefully an answer will be found! Our roller coaster ride of life is never stops .
Gwen Deely
Exhausted (mentally and physically) just reading your harrowing story…and your poor son waiting outside all that time…and then to leave with no answers…my god, you are an angel and your husband is very lucky to have you advocate for him. Hang in there.
Barbara Schettini-Burton
Sudan I cannot believe what is happening to your loved ones. Maurice snd I send healing prayers to you all
Heidi M Breuer
Yes the world is changing and not for the better sigh ❤
Laura De Nigris
Sue, you are so strong of the best. Sounds like you have a real big problem with the health system in the US. If I was an American citizen I would fight for better health care. Anyway, I’ll keep praying for your family until a definite result comes out of this situation. 🙏
Stefany Kahle
I am so sorry you had to go through that ordeal. You are all in my thoughts and prayers. Hope you can get some much needed rest. Praying for answers and healing. 🙏❤
Vivienne Fleischer
Oh Susan I am so sorry to hear of all this. With 3 back to back ER visits with my mom over the summer I know exactly what you guys went through and you made the right call to take him home and follow up out patient. Hugs to you both and I hope you get answers soon. Xox
Barbara Kessler
So sorry your family is going through this. I hope and pray that you get some answers. Sending hugs.
Janet Eisenberg
Susan, this sounds dreadful for you all. I imagine you remain on high alert anticipating another tube blockage. 😳
Sabrina Kende
Hoping Robert is doing better and your able to get some rest 🤗
Sandra Adelman Shindler
Sending Love, been there, done that, not fun, stay strong my very strong friend.
April Foster
Oh Susan, what a horrific experience for all of you. I am stunned by the hospital”s inability to respond and overwhelmingly impressed by your perseverance and resourcefulness. Know that I will be thinking of you and your family. Much love to Rob…