Backstory: I was a Shriner’s patient for about fifteen and a half years of my life. Since I was young, all I could remember the doctor saying “We’ll wait until she hits puberty and then see from there about a surgery.” Well, what they were waiting on was to see if my spine would grow. (I had a fusion at two years of age and as my spine would grow, it was supposed to correct itself; well the spine didn’t grow, instead, it kept curving.) When I finally reached puberty, (which was about fifteen or sixteen years old, being a “late bloomer” is so much fun! Not! Haha) the doctors changed the story to “nothing else can be done without paralyzing her.” Well, can you imagine being told that you were going to have this huge hump on your back removed once you became a teenager and hit puberty, then suddenly the story changed and you would now be stuck with it the rest of your life? My heart broke, I cried like a baby; it’s a good thing that one of my besties was there and we went a walk to calm me down. At seventeen and half years old, I got discharged because Shriner’s is a children’s hospital and my next appointment would’ve been after I turned 18 years of age. Since that time I hadn’t been to an orthopedic doctor (almost 2 years), and mom was worried, and she heard good things about Dr. Williams in Opelousas.
My Scoliosis Journey in St Louis, Missouri began on Jan. 2011 after a referral from a local orthopedic dr to go see Dr. Lawrence Lenke (who has since moved his practice to New York,) because my Scoliosis was “too complicated” for the local doctor, and “looked like a rollercoaster” (Try living with it, dude!) It usually took a year to get in to see Dr. Lenke, we got in within six months!
The initial meeting with Dr. Lenke was very emotional. I really cannot “sing his praises” enough! He saved my life! When he came into the room, he smiled and did the usual doctor stuff: reviewed my x-rays, feeling how uneven my hips were, traced the curve of my spine with his finger, the same old routine to me- I could probably do it in my sleep! Finally, when we talked, I had questions and he answered them politely, honestly, and kindly. There were some I didn’t ask because I am sometimes shy (not very often, but it does happen occasionally: especially if the questions are embarrassing) and were embarrassed by some of the questions. He saw I was hesitant and took the list and read over the questions and gave me answers. He didn’t laugh or make any rude remarks, he made me feel like there were no “dumb questions.” When he was talking he wasn’t saying “if” he could do the surgery, he was saying “when’ so that just filled me and my mom with so much hope that once Mom and I were out of sight in the bathroom helping me change out of the hospital gown, We hugged and both cried it out in the bathroom: Bawling like 2 big babies, but these were different than the tears I shed at Shriners in Shreveport at 17.5 years of age; these tears were happy tears of joy! Mom and I had gotten our hope back! Imagine, being told that you would have this Scoliosis hump the rest of your life and then come to find out, there is actual hope! However, I had a choice to make, take the risk of paralyzing from surgery that could save my life and not paralyze me..or leave my “Scoliosis to continue to get worse until my spine collapsed” and end up paralyzing me anyway? I chose surgery, although my dad originally thought it was for “vanity reasons,” however, he realized how bad it was when he saw the model Dr. Lenke had made of my spine before my surgery; his response was “That was in my daughter!!!?”
However the following December 2011, my original pre-op appointment, things were emotional again, but for a different reason. It had been a long day (12 hours to be exact) of MRIs, Xrays, CTs, getting poked with needles for bloodwork, doing a PFT(Pulmonary function test), and finally at 8 p.m., I saw Dr. Lenke. He was a bit more apprehensive this visit; My ribs were twisted around my spine and my lungs were pretty much being crushed by my spine and my lung capacity was 18-20%. He moved up my Halo Traction date to Jan. 5, 2012 and told me I could be in traction for almost up to a year and still possibly not have surgery. So Once again, I broke down crying. However, the next day, I had a visitation at Shriners Hospital St Louis- where I’d be spending time for my Halo Traction stay and the care coordinator for Dr. Lenke, Joetta Whorton, helped restore my hope. She was all, “We’ll get those numbers up, you’ll have that surgery. Don’t you worry!” By the time I left that meeting, I had cheered up about 50% because of her words and all the nice staff, and all the fun I was promised in the recreation dept. Sure I was still apprehensive, and scared, but I knew I didn’t have much choice if I wanted to try to fix my back. I was also excited because with recreation, we had to do weekly projects and I figured it’d be an opportunity to learn cooking and some other stuff I had been wanting to do, but due to being at college before, I hadn’t had time. Another wonderful person I met that was optimistic about “getting my numbers up” in pulmonary was respiratory therapist, Wendy, who even gave me an I.S. to practice with a month before I was due to start traction.
I left my hometown of Opelousas, Louisiana, bright and early January 4, 2012. I left my family and friends and had no idea when I’d be back and see them again (I even stopped to visit my bestie, Amber, before leaving because she had something for me; She was tearing up but trying not to cry and so was I, but as soon as I got into the car and opened her gift and read her card, the waterworks started). I don’t remember what time we finally reached the hotel (Haven House) after our flight, it was dark I know that and had to be up at 4:00 a.m. and be at St Louis Children’s hospital around 5:30 a.m. for the halo placement procedure, but of course, anxiety made falling asleep a challenge, but eventually, it happened, and I did not want to get up to dress in the morning, so I went to the hospital in my PJs; I’d have to put on a hospital gown anyway!
By 5:45 a.m., they did all the pre-halo surgery stuff- weight, height, peeing in a cup, taking my temp, having me change into the hospital gown, etc., etc.. At about 7:30 a.m., they took me to the back (operating room) and started prepping me—IVs, etc. By 8:10 a.m., I was out of the halo surgery and recovering well. I was able to drink some 7up and wasn’t nauseated at all, I just had a really bad, throbbing headache; Then again, if someone was drilling into your skull, you’d probably have a headache too! By 11 a.m., I was recovered and out of Children’s Hospital and made it to Shriner’s Hospital to begin my journey with traction. I did eat some lunch because I was starving, but I had gagging and nausea later on, but later that night, I was up and about socializing at “Great Lengths club” (A thing they have at Shriners for Lengthening devices- Halos, Taylor Frames, etc), eating pizza and socializing with some of the others there who had Dr. Lenke as a Dr. also.
Mom stayed with me until the following Sunday and then she had to go home; That was so hard for me because not only was I going to be alone in an unfamiliar place, I’d have to be “my own advocate” and tell the nurses what I need, but I also had some pain and nausea still from the Halo Placement and I had taken a Lortab for pain which made me sleepy, but I had to be in traction and couldn’t sleep all day long which made me irritable and emotional. For 7.5 Months, Mom traveled back and forth 3 weekends out of the month to stay and visit with me, and then after surgery, 2.5 months with me; God bless this woman I call my mother!
Despite being far away from friends and family in Louisiana, I made many memories and new friends in St Louis while experiencing this life journey. Sure, some nurses and I clashed heads; but most of them, I got along with. Some of my new friends include all the nurses/caretakers at the hospitals…Joetta Whorton, Naomi Thompson, Kathy Blanke, Donelle Sherman–the main four women on Dr. Lenke’s team that I spent a lot of time with, along with all the nurses/ recreational therapists/respiratory therapists(especially my “personal Hitler/drill sergeant,” Marcela Spraul, her respiratory team—Wendy, Stephanie (who no longer working there), Jodi, Terry, Ruby(no longer working there); Many of the nurses: Carol and Pauline (my first two nurses), Dottie, Pam, Lisa, there was a nurse Melissa, a nurse Valerie, a nurse Amy, Nurse Nancy(who was like my best friend RIP dear friend), Tina, Denise, Charity(my “sister” because we bicker so much- RIP), Rachelle(no longer working there), and many more! Kate(who’s job I don’t exactly remember the title of LOL- sorry Kate!) and Lisa who was with housekeeping but is now working at Barnes or Childrens of St Louis. Leighton who worked in Pharmacy: he liked to tease me about my LSU tigers and when I’d wear my LSU shirts, and he once brought me a whole Red velvet cake when I joked with him about wanting it: it was the weekend and he was telling me bye-
L: Have a good weekend Jamie, is there anything you need for a great weekend?
Me: Well, It’d be a fantastic weekend if I’d get some red velvet cake
needless to say, that monday, he walked into my room with a whole red velvet cake and told me “This is just for you, you cannot share with anyone.” However, with the small stomach I have, I had to disobey his orders of not sharing. LOL
I also made friends with the Physical therapists-too many to name, but the main ones—Becky (Shriners), Patti (Shriners), Tim and Rachel (Children’s). All of the staff in Recreation department: Jen, Barb, Kerry, Laura, and the others that weren’t as frequent; they made Shriners stay more enjoyable, entertaining, and tolerable. All of the Xray team, but especially Melissa because we pick, fight, and bicker like sisters. Lol. All of the cafeteria workers but especially Sylvia, Andy, Marsha, Mrs. Ann (dietary specialist) who always went out of her way to get me snacks that the hospital normally didn’t carry. And of course, Dr. Weatherford the psychologist who was often my sounding board for all my emotions 🙂
As I said, lots of new friends and not even done, sadly due to all the meds and time that’s passed, I have forgotten some names of the ones I didn’t have as frequently and feel so guilty for that! 😦
I also made many of new friends in fellow patients: Sechaba Kershner, Blake Zaunbrecher, Nicole Rodman, Kamille (can’t remember her last name, sorry ‘Mille), Heather Langley, McKenzie Burke, McKenzie Miller, Jeanette Salinas, Elora Pasley, Ali McManus, Courtney Mashburn, and some other fellow patients and all their families. I also made special friends with my dentist back home’s brother and sister- in- law, Mr. Steve Chachere, and Mrs. Denise Chachere; they took great care of me when Mom wasn’t able to come up to St. Louis to be with me, they took me out on out passes, and just made me feel part of the family. A few other new friends I made were from the group Cabela’s that came to the hospital once a month to do crafts with the kids; Mr. Mike James(RIP), his wife Nancy, and Beverly-Barney-Duvall (and I later made friends with her husband, “Doobie”.) Mr. Mike and Mrs. Nancy came a few times to see me after my surgeries at Children’s Hospital too. Beverly and “Doobie” hosted me in April 2014, when I went to St Louis for a visit and not a medical appointment. They also hosted Mom and me in August 2014 for a medical appointment/ as well as a “reunion” at Shriners Hospital for their 90th anniversary/birthday thing. I love you all and I don’t know what I’d do without every one of you all in my life! ❤
During my long seven-and-a-half- month stay at Shriner’s Hospital of St Louis, there was some staff I clashed with, but for the most part, I got along with most of them. I would give each of them a personal shout out, but that would take a book in itself; so many wonderful staff and precious memories, so I will just name a few so you can get the idea of how awesome the hospital is.
One staff member that I loved to give a hard time was the respiratory therapist director, Marcela Spraul. She had a specific way she wanted my respiratory therapy done and I didn’t like her way; I found it more difficult and I was proud of my way because I got higher numbers. One day I told one of the respiratory therapists that worked under her, “Thank goodness, it’s not Marcela; she is like the Hitler of respiratory therapy!” Well, let’s just say word got back to Marcela of what I said; guess who was not only my wake up call but also my respiratory therapist for the rest of the week; Karma is so funny….not! *rolls eyes*
Marcela may have been tough, but she was fair and she also cared a lot for all of her patients. She would tell the parents, “When they are here, they are my children also.” She visited me like two or three times after my surgery at Children’s Hospital of St Louis, which was a different hospital than where she worked and almost a 15-minute drive away from each location. (My only regret is that I was too drugged up on pain medicine to know if I even interacted with my visitors after surgery.)
I loved to give a hard time to a nurse named Charity(RIP); she was like a big sister. She (Charity) always would greet me, “hey trouble,” to which I would reply, “why are you talking to yourself, Charity?” We loved to bicker; it was like having an older sister.
Another staff member that was a major influence on my journey, was my Care Coordinator, Joetta Whorton. Joetta loved to mess with me, but I would give it right back to her. I would sneak downstairs to Outpatient Clinic (where her office was), and sneak up behind her. She, like Charity, loved to give me the nickname “trouble;” Hey I accept it; I am trouble…..sometimes. Despite her calling me “Trouble,” I know she loved and cared for me because when I had my broviac central line procedure, she was going to stay with me since my mom wasn’t up there with me. To Joetta, You are an important asset to the hospital all the years you have been there. You’ve changed millions of children’s lives just by being a care coordinator; you are like a second momma to thousands of children. When you had retired for that short little time, I felt that the future Shriners’ patients were losing out on not knowing a terrifying (just kidding…terrific), warm-hearted, funny, fun, and caring woman; that you would be greatly missed by those at Shriners, and I was worried about miss seeing you in the clinic when I go by Shriners to visit. But, that wasn’t the case; I kind of had a hunch that you would go bat-s**t crazy in that house with nothing to do! LOL. I always hold the memories of Shriners in my heart. Especially sneaking off the second floor to go harass you in the clinic. I remember I had gone to lunch with Dr. Weatherford one time and Joetta had been looking upstairs for me. She comes in the lunchroom and said: “I’ve been looking all over for you, trouble.” To which I replied, “And I’ve been avoiding you!” LOL :)=== That was during one of the first few weeks I was there.
As much as they gave me heck, tried to “push my buttons,” I gave it right back to them! Can’t keep this girl down; She is hell on wheels! HAHA! Now, years later, Shriners Hospital is no longer on Lindbergh where it was when I was there: They have moved locations and the move cost some their jobs, and a smaller facility. I am not happy about their location move, but if it helps more children and keeps up the mission that Shriners was founded on, then I can’t complain; Plus the new facility is nice looking, but it’s just not the “Shriners home” I had for 7.5 months and visiting my Shriners people who are still employed there, it makes me a little heartbroken because some of my people have left and I have no way of contact with them. (Cue the sad music and tears, LOL.)
Surgery and more: On August 16th, 2012, my life took a turn and changed forever. “Why?” You may ask; well that was the date of the first phase of my surgery and the beginning of a long journey. The surgery was a long 12 hours under anesthetic; there was a problem with the Broviac central line: one of the lines had been cut, days before, and the anesthesiologist was worried about the clamped/cut port, so they had to remove it and put in a pic line before starting the surgery. The first two and a half weeks post-Op were difficult; I pulled out my breathing tube, got a bad respiratory infection, got pneumonia, and ended up having to have a trachea inserted; which was still inserted when I returned home on October 15th, 2012 and was removed on February 21st, 2013. The second phase of surgery was commenced on September 20th, 2012. This surgery was shorter and I was only under anesthetic for six hours. Fewer troubles for this surgery (PRAISE GOD!)
Despite the pains and struggles, I had to get up out of the hospital bed and do therapy. No matter if I was crying and hurting; I had to do my therapy, walking with the walker, and using a ther-a-band to build up leg/foot and arm muscles. Some people might say: “How heartless are those people?!”; “That girl was in pain!” but my mind thanks them. That pushing has been the fiber of my being throughout my entire life; it is what has made me become the successful, independent person I am. Without that pushing, I might not have graduated high school or gone to college or even had the urge to do this surgery.
During the recovery time after my surgery in 2012, I had a lot of issues: I had pneumonia right after the first surgery and ended having to get a trache, I pulled out my breathing tube, I had a terrifying nightmare while I was sedated for 2 weeks straight(Due to pneumonia,trache, etc), I had a seizure due to a mucus plug, They thought I had C-Diff (a type of infection), and then after the second surgery I had developed a pressure sore. You probably read all that and think, “Damn, this chick has been through hell and back,” but there are other memories that I’d like to go more in-depth with at this time.
During my time in the hospital between surgeries, I had very odd dreams probably due to the heavy narcotics I was on.
The scariest dream was after my first surgery, mom says some parts of it are probably things I overheard during those first two weeks; it’s a dark living room setting, nurses and student nurses are surrounding me. I was strapped to a recliner and it’s in the bent back position. A funnel is in my mouth and I’m being force-fed narcotics after narcotics. When Mom comes into the room, the nurses lie to her saying “she has become addicted to the drugs, that’s why she is crying and shaking; we are detoxing her,” but as soon as she’d leave the room, they’d turn back to forcing more meds into my system. The last thing I remember from that is watching the monitor beeping and thinking in my head “I’m dying.” Parts of this dream are true, from what mom tells me; the part where I looked at the monitor and said: “I’m dying, “apparently I had done that in real-time too; turns out the nurses had unplugged my pulsox machine and my o2 (oxygen) had a huge question mark on the monitor. Another true part of the dream was when they said I was detoxing, mom claims she said my actions were that of someone who was detoxing, and she said I probably overheard that while I was still in “dream mode.”
I also had trouble with distinguishing dreams from real life; poor mom never knew what to expect to come out of my mouth when she came to my bedside: From Dr. Lenke is a spider, but a good spider, to “I saved Atlantis from drowning;” TV and good drugs just don’t mix, or they do, depending on how you look at it. Some happier dreams I remember having while in the hospital included: Me helping save Atlantis from drowning under the sea, I helped Puss in Boots and Humpty Dumpty, and I even dreamed that Dr. Lenke, my orthopedic surgeon, was a spider, but he was a good spider; not a bad spider that bites people or lays eggs in people’s brains when they are sleeping … Hey! Maybe that’s how I helped Humpty Dumpty, maybe I took him to see Dr. Lenke the spider to put him back together again; I guess the world will never know, what “Spidey” powers Dr. Lenke could have! HAHA!
Another memory that mom loves to laugh about was the “I want to lay in the bed like a normal person,” meltdown. I had PT twice a day, but due to all the equipment, one day, they had to move my bed, to get me out of my room. When we’d return, they’d put me back in bed, make sure my body was aligned and straight, asking “are you straight?” Well, I was high on pain meds, so the only way I could tell was by looking at the ceiling, and if the tiles were straight, then I was straight, but due to my bed being crooked that day, the tiles were crooked despite my body being straight. I told them “no,” so they kept trying to adjust me, and asked me again and again, “are you straight now?” By the third time, I’m getting frustrated and emotional, I snapped. “I JUST WANNA LAY IN THE BED LIKE A NORMAL PERSON!” Tears streaming down my face, and I’m starting to hyperventilate. Mom tries to calm me down, “Jamie, we are working on it, calm down…it’s okay.” She notices that I’m looking up at the ceiling and once again she laughs as she tells PT why I am not straight.
Another memory was closer to discharge time when I had that pressure sore. Dr. Lenke would come in at the early hours of the morning to do his rounds. He’d come in, roll me onto my side to look at the pressure sore, then take notes, then leave. One morning he was running late, rushed in, and practically flipped me by grabbing the sheet to roll me, quick. When he walked out, I told mom, “I feel like a fish or a hamburger, he just flipped me!” She just laughed cause I was so funny on my pain meds; no filter, but that’s me in real life too! HAHA!
During the hospital stay, something was going on in the park across the street called the “Forest Park Balloon glow,” and we had a perfect spot to see it: 10th floor of children’s hospital of St Louis; Too bad I was “high as a kite,” on pain meds and had no interest in it, but mom enjoyed it (Finally something Mom could enjoy for herself and not be “all about Jamie” LOL). We had some friends that we made while in St Louis, who came and brought food to watch with us, the nurses had turned my bed to the window and even raised me almost as high as the ceiling to watch it; but no, I had to be passed out sleeping from pain meds! At least, Mom got something enjoyable out of my hospital stay, the poor woman some days looked like she hadn’t slept a wink! I even told her one day, “Mom I feel sorry for you,” she was like “why?”, and I said while touching her face, “you got bags under your eyes, you look tired!” What can I say, I love my momma.
Also in St Louis Children’s’ hospital, I didn’t have much appetite but they wanted me to eat, so one of the nurses or rec people knew the chef, and asked him to come up and ask me if I was hungry for anything specific that wasn’t on the menu. The joke was he was my “personal chef,” his name was Chef Rob and he went out of his way to help me eat even when I normally wasn’t hungry. He made attempts at Louisiana cajun food and it was pretty good for being out state, had the right amount of seasonings, however, his “rice and gravy” was very skimpy on the gravy, and his “gumbo” was about how we do our “rice and gravies” back home; however, his fried okra was amazingly good. He also made me lobster stuffed mushrooms, YUM! He always went out of his way to make me feel happy and want to eat. Thanks, Chef Rob!
Another funny memory was with Tim, the Physical therapist. We did my walking but also went walk downstairs near the gift shop for some “retail therapy,” as mom calls it. Near the gift shop, there is a fish tank, and let’s just say pain meds and a girl with no filter, watching fish in the fish tank chasing each other, not a good idea for a children’s hospital publicly:
J: that fish is chasing the other one. I bet he’s a male and he’s trying to rape the female.
Tim: Jamie! this is a children’s hospital
J: Oops! Sorry, Timmy!
We get back to my room, and I had this gel pillow thing for my pressure sore.
Tim: Looks kinda like a breast implant doesn’t it?
J: You just fussed me for talking about sex and rape, and you over here talking about breast implants? What the heck, Tim!
Tim: the difference is we are not out in the public where the whole hospital full of children can hear. Just you, me, and your mom
we all laughed. 🙂
Once back home, I still had some pain, but each day I was getting stronger. Even back home, I still have to do my therapy, as well as be careful with how I turn; I can’t twist or turn at certain angles, along with other restrictions. When winter came, the weather changed, and my post-surgery pains got a little worse than I can handle without pain meds … let’s just say, ”Mr. Valium” and I had become pretty good friends.
That long journey that consisted of nine months in St. Louis has given me a lot: It taught me patience, it has given me many new friends to go back and visit with, it has given me a new back and a new body(until I broke those rods and had to have a revision surgery August 2019)–which once again gave me another newish body- and gives me a good excuse for a whole new look! (Any excuse to shop is good HAHA!) :)
Jamie's Twisted Journey 