Visitors
I had lots of lovely people who visited me while I was in the hospital.
My family, including mom, dad, Wendy, Misty, Erin, Ryan, Sheila, Sarah, Barry, Jayne and Janet all visited multiple times. Friends like Matt and Kelsey were constant fixtures. Other visitors included Courtney, Don, Jeamy, Catherine, Shantell and Rachel. If I’m leaving anyone out, I’m sorry. I was on drugs. I was on a whooooole lotta drugs.
Some things I remember: I remember being really pained and upset during some of the visits. I remember Kelsey holding my hand and kissing my forehead. I remember Jeamy and Catherine standing in the doorway, but I don’t remember talking to them. I remember my mom reading crossword puzzles out loud and me trying to guess words, falling asleep in the middle of trying to talk and her practically spelling them out to get me to figure out the answer.
One of my favorite visits was from Don and Courtney. They brought pizza and soda for my parents and Matt who had been stuck at the hospital with me. They also brought me a present. It was a very soft, navy-colored bathrobe. Instantly, I fell in love with it. I got so excited and gushed (imagine drug-induced gushing with long, drawn out words and half-closed eyes) about how much I loved it and how navy was my favorite color. Courtney still finds this hilarious, as I don’t own one single navy thing and everyone close to me knows my favorite colors are red and purple. But, man! At that moment, I looooooooved navy.
I remember toward the end, I had taken another pill and hit my morphine button quite a few times and just started zoning out. I apparently started talking to people who weren’t in the room with me and then went into drug paranoia when I realized I was talking to people who weren't there and I thought my visitors were all laughing at me, which now from the things they’ve told me I said, they should have been laughing. I started to get uncomfortable, so they left. A little bit later, I had dad throw out all the food they brought, as the smell was making me nauseous.
Which brings me to food
I don’t remember eating in ICU, but I kind of think I might have tried a popsicle on my last day. [Mom, let me know if that's right in the comments.] I definitely started eating again in PCU. As I said in my post last week, everything I would do was about passing time for me. Ordering and eating food was one more means to this end. I don’t remember ever actually wanting to eat, nor do I remember the frequency with which I ate. I’m not sure if I ate three times a day or less.
I would often order broth, mushed up fruit, cream of wheat or popsicles. In the beginning, broth was all I could have, as it is very hard for your digestive system to start operating properly after surgery. Popsicles were my favorite because I could zone out and practically fall asleep while eating them, just feeling them smush up in my mouth as I ground my teeth together (helloooo, drugs). That’s harder to do with broth. [Another question, mom, did you feed me or did I do it myself?]
Here’s the part _.jpg)
only the people looking for information on what their hospital stay might be like will want to read, probably:
After every meal in the PCU, I would have to drink Miralax mixed with apple juice. I hadn’t eaten solid foods in almost a week and for some reason they really wanted me to have a bowel movement before I left the hospital. I remember starting to feel really full each day; as Dr. Nguyen warned, there was some distension and bloating. It would be days before a bowel movement would be likely, so they really pumped me full of this Miralax stuff.
Other necessities
My occupational therapist started visiting me in PCU each day to do more than just walk. Now I needed to learn how to take care of myself. My first day there, I had to get out of bed, walk with my walker to the sink and brush my teeth and wash my face. Sounds easy, right?
Except, I didn’t know how to use my arms anymore or bend over or stand right to do these things.
She helped me figure out how I could do this with my new body. For a long time, I wouldn’t have full-range of motion. I would slightly lean more over the sink, barely raise my arms (raising above shoulder height wasn’t allowed and felt bad; the goal is to keep your elbows down for now) and lower my head to try to brush my teeth, and then try to spit or let it dribble down and try to clean it up. Washing my face was a little easier. I just would wet the cloth and kind of lower my head and run the wash cloth over my face with my hand. This was all surprisingly hard and tiring to do. I would do all these things while she watched and gave me pointers on what all I could do to improve.
The most difficult things — learning how to shower, brush my hair, and get dressed — I would learn on my last day in the hospital- Jan. 19, six days after I showed up for surgery, crooked and ready for straightening.
I have a vague memory of the trip from the Intensive Care Unit to the Progressive Care Unit that Friday. I know they are located just across the hall from each other because of the tour of the hospital I took before my surgery. It was a short trip to PCU room 331, but I remember feeling nervous. I felt so awful, how was it possible that I wasn’t ICU material anymore?
In the PCU, the slew of nurses, techs, doctors and therapists continued. I had to keep doing the breathing tests and would still get x-rays every so often.
One Awful Night
My first night in PCU was horrible. This was the only time I came in contact with anyone in the Baylor system who I felt did not care about me or my pain and feelings. During my stay in the hospital, I would often call my nurses to my room for a variety of very necessary reasons — maybe I was in a lot of pain and needed more pills or I just had a pill but was in so much pain I needed help rolling over to another side to try to get comfortable or maybe I was worried my catheter was kinked and needed them to check it or I just needed someone to tell me I was ok and only had a little more time to go ‘til my next pill. Whatever. You just need nurses — good nurses — when you’re in these places.
This first night, the overnight nurses sucked. There were two of them, both women, if I remember correctly. One seemed irritated every time I would call her into my room. My previous nurses always seemed happy to help or at least didn’t make me feel stupid or weak or wrong for asking for the help they are supposed to provide and I needed them for. This is a real need. That night was the first time a nurse not only flat out refused to give me pain meds upon my begging, but also didn’t offer any other help to deal with my pain. One of these nurses even changed my catheter bag and then couldn’t get it hooked back up to the bed, so she just laid it in the middle of the floor and left.
That was the longest night I remember having in the hospital. My mom stayed the night with me that night (my parents took turns staying the night with me each night except the first night in ICU when my sister Wendy stayed with me). I kept trying to sleep through the pain, but I was constantly waking up, calling to my mom and crying with her about how awful it all was.
After that nurse shift, I once again had phenomenal care at Baylor. Thankfully, those awful nurses didn’t treat me again. I even got a fantastic surprise when Nurse Tricia, who as I’ve said multiple times is my favorite nurse ever, got to work in the PCU and take care of me.
Walking
The Occupational Therapists returned when I was in PCU. Of course, they forced me out of bed. But this time I didn’t get to just sit in a chair. I had to learn to walk.
Using a walker and with my OT on one side and parents on the other, I learned how to put one foot in front of the other and start moving. It was hard. It was so, so hard. Every thing you take for granted before scoliosis surgery is a new sensation after it. It felt all wrong and different walking. I remember how happy my parents would get to see me up and moving. Everyone would talk about how tall and straight I looked. I felt it, too. (note: there are pics of me walking, but my mom has them on her computer, so I'll have to post them later.)
During my first walk, I moved from my room down the hallway and back again. It took forever. Baby steps. They asked if I wanted to keep going. Ummmm. No. And I went back to bed exhausted.
Over the next few days, I would walk multiple times. One- because sometimes I was forced to and two- because it helped me pass the time. Passing time feels like dealing with pain. Time is one thing that you just have to get through when you’re in an extreme amount of pain. It’s almost a tangible obstacle you fight against. Anything you can do to get through more time and get closer to that next pill or until that happy day when you don’t feel bad anymore is something worth doing.
Eventually, I would walk several times a day, with my walker and my parents, up the hallway by my room and down three more halls to make the square back to my room. My parents were ridiculously proud of me during these walks. It’s funny because everyone was. Even people I didn’t know. Other PCU scoliosis families would see me, or any patient really, walking down the hall and would stop and smile and give encouragement. They understood. They knew what a struggle this was for me because their loved one was also struggling. They couldn’t do it for me, but they could smile at me or say something encouraging and send me love and that was enough. It chokes me up just to think of these people and their smiles. I want to thank each of them- these wonderful people who I will never see again but who helped me when I needed it so much.
I’m a bad blogger. I know. Attribute it to pure laziness. My only flaw. :)
A couple of weeks ago I met a woman who reminded me why I need to finish this blog. She was my age and about to go in for surgery. She was very scared & had a lot of questions for me. I did, too, once. If anyone out there is looking for insight into what they face with one of these surgeries, I want to paint every picture I can for them. So I’m going to re-cap everything I can. No promises on how long it will take me to do this or how frequently I’ll post.
Standing up never felt so awful
My second day in the ICU, I was visited by a physical therapist and an occupational therapist. The PT told me something that was about the worst thing I could possibly imagine. He was going to get me out of bed.
Nowadays, after scoliosis surgery, they want you up and moving as much as possible. If you’ve ever had this type of extensive surgery or been hit by a bus before, you know how ludicrous that sounds.
First thing I had to do was “log roll” to the side of the bed. I’d been rolling to one side or the other, with help from the nurses, every so often sin
ce I arrived in ICU. It’s one way to deal with the pain. My back would hurt so badly. I could only take so many pain pills or hit the morphine button so many times before I would beg my nurses for help. They’d roll me to my right or left side and tuck pillows all around me to keep me in one position comfortably. Sometimes it worked. Sometimes it didn’t.
Anyway, my PT wanted me to log roll. I rolled onto my left side [wince] then back to my back [ugh] and a little to the right. Then I’d go back and forth, back and forth, until I was on the edge of the bed. I remember thinking, “Like hell, I’m getting out of this bed.”
He then wanted me to try to prop up on my left hand (under me) and place my right hand across my body and near my left shoulder to push up while I swing my legs down off the bed to a seated position. He might as well have told me to somersault.
I kind of tried and nope. Wasn’t going to happen. He started to help. He was doing exactly what he was trained to do and doing nothing wrong, but his help hurt. I sat up, though. I’ll never ever EVER forget what that felt like. You know when you get x-rays and they drape those heavy vests over your shoulders for protection? It felt like I had on about a million of those. My body felt like it gained 200 pounds, and it was all weighted in my back.
Then, half holding onto a walker and half holding onto my PT while he and my parents offered encouragement, I stood up. And the heaviness on my body increased. My head instantly started hurting (as mentioned in another post). I took baby steps, really more like baby slides, to turn myself around and sit in the chair next to my bed.
Imagine someone tying a thick slat of wood to your back- one that runs almost the length of your spine so you couldn’t bend or move hardly at all. Now how would you sit in a chair? For the first time in my life, I had no clue how to sit. They propped pillows behind me, which helped, but I couldn’t relax into them. My body no longer folded appropriately to fit the chair. If you’ve seen me in the past 9 months, you know I can sit in a chair quite normally, with perfect posture, but back then, it was awkward and awful.
I had to sit in the chair for 30 minutes. One good thing came of this. Nurse Tricia, my favorite nurse ever, was there to help. Once I was in the chair, she looked at me and asked if I would like to have my hair brushed. During surgery, some tape had gotten meshed up in my hair. By this point, my hair was ratted and knotted and stuck to the tape. I was a mess. Nurse Tricia got a hair brush and some rubber bands from my mom. Slowly, gently, she picked the tape out of my hair and brushed out all the rats. She didn’t stop there either. She then French braided my hair into two braided tails. It was one of the nicest things anyone ever did for me. It sounds so simple, but it made me feel human and helped me to not feel so freaking awful. Then it was back to bed.
Panic
My surgeon came in a little later. He wanted to talk about the headache I had when I stood up. As Kelsey detailed in that other post, this wasn’t good. For the first time, I heard about the “hiccup” in surgery. Dr. Hostin wanted me to lay flat on my back in bed (no moving side to side or elevating my bed) for 24 hours and then they’d stand me up again. If the headache was still there, they would have to do the epidural blood patch (again, see Kelsey’s post). This did not sound fun.
I was really worried. The look on my mom’s face told me she was worried, too. I was so upset that of all the surgeries, something had to go wrong in mine. Then there was the lying flat. It is terribly hard not to move for an hour, much less a day. I felt so uncomfortable and the pain just started to collect and weigh down on my back and everywhere on my body that touched the bed.
That night (I think it was night, but really I had no sense of time), Kelsey brought Rachel and Shantel to visit me. I don’t remember a whole lot except I was in a pretty bad place when they arrived. I remember them petting me and trying to make me feel better. They brought me gifts. If you are reading this now, girls, it meant the world to me that you came to visit me. I was out of it, not very conversational, but I am so happy you came. Thank you.
Day 3
The next day the OT came back, and we did exercises in bed, which consisted of me moving my arms up and down (not past my shoulders, as this is not allowed). My internist came by and said all my organs seem to be ok after surgery.
My test happened that afternoon. The PT came in to get me out of bed. While still ridiculously uncomfortable to stand up, I didn’t get the headache rush. Everything was going to be ok.
I sat in the chair for an entire hour this time. OMG it sucked. Then, back to bed.
That day they decided I was out of the woods enough to be moved to PCU to recover more and start to learn to walk and take care of myself, all of which will (eventually) be mentioned on here.
Alternate title "Thank you, Jebus, for giving me sweet, sweet insurance."
I paid some bills last week that had been piling up from my surgery. I had yet to pay a bill since my surgery, as I am lazy and poor. After the sixth & final notice ("No, no, really. This is the final. Please, please pay us! No? Ok, we'll send you another notice in a week or two.") from one very persistent medical group, I figured it was time to get it over with.
Now that my checks have cleared, we can add $2,470.62 to the $1,736.01 that I already paid (insurance adjusted down from $6,897.36) before the surgery. What is shockingly amazing to me is how much insurance adjusted. Can you imagine what people who don't have insurance do?! So sad. Here's the breakdown:
Anesthesia bill $411.21 (insurance adjusted down from $4,578)
Pathology lab $108.72 (insurance adjusted down from $747.89)
Additional labs $53.60 (insurance adjusted down from $1,108.80)
Hospital bills (this is the real kicker) $1,897.09 (insurance adjusted down from $179,654.02, as detailed here)
So if I hadn't had insurance, based on the original bills, I would have had to pay $192,986.07!!
$192,986.07!!!!!
This does not count the prescription meds my parents picked up for me when I left the hospital. I still have to get those receipts, pay them back and then add those to the running total.
So the new running total on this whole shabang is $4,206.63.
Who wants to buy me a drink? Seriously. Don't make me beg.
The half-year mark
Today marks six months since my surgery. It was singularly the biggest event of my life thus far. It's hard to describe how everything is so very different when there's many things that are the same. I can't stop thinking today about everything that has happened. This post is going to be a long one. If this bothers you, bite me. This is all for me today.
I remember that day
I will never forget it, how scared I was. Any excitement that I felt before the surgery day had flown out the window when I was taken to my personal waiting room. I changed into the gown they gave me in the bathroom and looked one last time at myself and was suddenly so, so sure that I was making a huge mistake.
My thought process on this day, six months ago, in that bathroom: Why was I such a whiner before this? I could get through the rest of my life like this, no problem. So many more people have worse things to live with the a crooked spine and hump back. I could die. I could be paralyzed. I could never do the things I love again. I may never see my family again. I just get my mind set on something, and it's full speed ahead. Jesus Christ, what the hell was I thinking?
Thank God for my mother being there, or I would have lost it right there. I remember laying there watching "While You Were Out" on TLC with her. Everything felt so wrong. I cried to the anesthesiologist. Asked him to promise that I wouldn't die. Asked him to promise that I wouldn't feel anything.
Then it was more talking to my surgeon, more questions from the nurses, happy juice from the anesthesiologist and good-byes to my family & friends. It was so surreal. Everything was bright and white and so normal seeming. Normal for everyone around me. I was in panic mode.
Changes that change everything and nothing at the same time
Today, I can finally say this: I'm glad I did this. This is one of the first times I've ever said that out loud. I am glad I did this. [It's crazy how choked up writing this makes me!]
Today, I don't experience the same sort of awful back pain that I once did. I feel like the pain I get now will eventually go away. It's not the stiff, pressurized pain I once felt, and I don't have pains when I breathe anymore either. I just get kind of achy, mostly when I'm sitting incorrectly or I spend too long in one position.
Today, I look different. My back used to be so much bigger than it is now, so much wider. I used to have a hump on my right shoulder blade. My ribs weren't centered and pointed to the right. My shoulder was higher. Now I have a massive scar that I am seriously proud of. It is my battle wound. I look at it, and I feel like a bad ass.
The lesser pain and the way I look are big differences, but there's so many more changes for me. I have a confidence that I have never felt before. I feel normal. I think I look normal. I have never felt like a normal person before. I always thought of myself as deformed. Not many people would think of that when they would see me, I know. But once you knew, you saw it. I always would look at my girlfriends from the side. You could just barely see their shoulder from the back of the arm then straight down to the small of the back. Mine was a giant "S" from the side. Strapless dresses with zippers? Forget about it. They didn't make them fit my type. Seems crazy to be so upset over that, right?
I remember in high school being in a high school pageant. I didn't win. Later, a teacher who was very friendly with my group and happened to be a judge, said I didn't win because I looked so bad in my dress. I still get mad about that. And embarrassed.
The big changes for me are all internal. Going through days and weeks and even months of pain changes you. I feel I look like everyone else, but I feel better about it because I had to fight to get here.
I've heard a lot of people tell me how amazed they are at my recovery and how quickly I've come out of it. I still feel like I'm in recovery a little, and whenever they say this I secretly scream inside that they have no idea what it once was like for me, but I get what they're saying, and I agree. I thought I'd still be struggling a lot more at six months than I actually am. Why would this be better for me?
I'm going with a few different theories on this now that I can look back at things with a little perspective.
One thing, I prepared myself as much as I could. I worked out constantly. I gave up smoking, caffeine, all the list of meds my doc gave to avoid. I saw a massage therapist/energy manipulator the night before my surgery to clear the air, so to say. I joined an online support group to learn more about the experience I'd be going through and get tips on how to survive. I started my blog to get all this shit out of my head. I gave myself two mantras to focus on whenever I needed them (1. I will be ok. My angels will guide me. 2. I plant this hurt in a sea of good thoughts and it floats away.).
Two, "buddha, buddha," as my friends and I call it. I asked my angels to be in the hospital with me to take care of me (Sally, Kelsey's uber-buddhabuddha mom said the surgery room was packed). I prayed to God. I prayed to each of my angels by name. I asked everyone I talked to to pray for me. I blogged for prayers, begging people to pray again. If for nothing else, the praying helped me to concentrate on something, made me feel like I had a small army around me. I truly believe I did, though, especially when I think about all the people out there who were concentrating on me and praying for me. I can't prove it, but I know it to be true. Faith, I guess. (I'm not so skeptical anymore.) I was so ready to give up at times, I knew I needed something much bigger than me to pull me through it.
Three, my support. I've read online about people going home, alone after their surgeries. I am so lucky that I had my family to go home to. My mom and dad were there for me day in and day out, and I will never forget how blessed I am to have them. I don't deserve these parents. Few people deserve the great parents I have. Same goes with the rest of my family and my friends and all the ridiculous amount of love, support and care I received. I'm going to include my surgeon and his staff in this. I am lucky to have one of the best specialists in the world for scoliosis practically in my backyard. The care I received is unreal. My blessings go on and on.
Present day
I'm not 100 percent recovered yet. I go to work, just like before, I just have a better chair to sit in now. I am back to working out, I'm just not ready to dance yet. I can't lift more than 25 pounds, and twisting into some of my old yoga positions seems like a funny joke right now. I look similar, but different. I have kick-ass posture. I get a lot of people telling me just how different I look. Quite a few friends have told me it's deeper than that. I have something inside me that's finally showing on the outside, too. People who really know me have actually said this to me, no lie, which is wonderful because that is how I feel. I'm still me, just better, I think.
One reason I decided to do the surgery was to prevent a lot of bad things from happening to me in the future. I am still scared of bad things but from a different perspective now. I am so happy with where I am today that I now worry about what would happen if I started to go crooked again. What if the rods slip or break (this can happen!) and I have to do this all again? Would I do it all again? I am so happy now. [Wow! I can say that!] I would like to think I would do it all again, but I don't know that I could physically, emotionally, mentally go through this ever again. It makes me so sick to think about. Many people have multiple surgeries for scoliosis over the course of their lives. I pray to God and my angels that this one time will take for me. Fingers officially crossed.
So, with all that off my chest now, happy anniversary to me and to every single one of you who has been with me through this! Six months down! I could have NEVER EVER been able to get through this without so many of you. Once again, to mom, dad, Wendy, Misty, the kids, Matt, Kelsey, the Stroopes, Carra, Monica, Janet, Barry&Jayne, the Pollards, Monette&fam, my Oncor colleagues, everyone who visited me or called me when I was away, to Dr. Hostin and his staff, to my beautiful Baylor nurses: thank you, thank you, thank you! xoxo
I lived in the ICU for three days. If you read Kelsey's post from Jan. 17, you know some of what happened in there.
One more angel
Each day I would have two nurses to take care of me - one during the day and one at night. These nurses were wonderful. One specifically, Nurse Tricia, was so good to me. She was a soft-spoken lady and very pretty. When I would complain about the pain and ask (beg) for help, I felt like she really wanted me to feel better. She was genuinely concerned. One time, the pain was so bad, but she couldn't give me anything; and I was soooo thirsty, but I couldn't have anything to drink either. She found these little spongy stick things, soaked them in water and gave to me to suck on. It wasn't much, but it helped.
This is how much this nurse went above and beyond- on the morning of my third day in ICU, she offered to give me a sponge bath to make me feel more comfortable. She recruited another nurse, and together they cleaned me up. All I had to do was lay there. This was the best part of my entire stay. I felt at least a little bit less sickly.
It is soooo important to have a good nurse. With one exception, which I'll get to in a future post, all of my nurses at Baylor were phenomenal. They made me feel like I was their top priority and like they really wanted to help me feel better. If I needed something, they tried their best to get it. Sometimes that just involved listening to me and consoling me when I was crying and upset, and they did so, no questions asked. These moments cannot be undervalued. Thank you to all my nurse/angels!!
Please, leave me alone
Every day, a slew of technicians, nurses, specialists, doctors, blah, blah, blah, would come to my room to pick at me, move me and make me do an array of things I just did not want to do.
The worst of the bunch were the x-ray techs. Each day, very early in the morning (maybe so visitors wouldn't hear me yell at them?) two of them would come in with a portable x-ray machine. One would stand on each side of my bed. They'd then countdown and lift me up and over using the sheet underneath me while one put a large, hard film case (sorry, I don't know the technical terms) where my back would be. Then they'd roll me back onto it. "OUCH! Ohmygod ohmygod ohmygod hurry!"
They'd take a picture, then lift me again and remove it. I'm sure they're very nice people in real life, but I hated them. Before I realized my dislike, I remember apologizing to one of them for my rank breath. I hadn't brushed my teeth in days and could feel the stench in my mouth. He said it was ok and not to worry. I never apologized for it again.
Just breathe
Another frequent visitor to my room was the respiratory therapist. (Thank you, Kristen, for the explanation of what follows) After surgery, you tend to lay around and not move much, so you begin taking slower, shallower breaths. If you aren't fully expanding your lungs, the tiny air sacs at the base of your lungs could collapse, leading to pneumonia. This is called atelectasis. To combat this, a respiratory therapist would come to my room multiple times throughout the day to do breathing exercises with me.
One of my frequent tests involved using an incentive spirometer. The picture on the left is the same one that I have. Every couple of hours, I would need to breathe on the tube, trying to make the yellow piece on the far left and the white piece in the middle raise up and stay up as long as I could on an inhale. I believe they would want me to do 30 inhales. When I left the hospital, they gave the incentive spirometer to me to use at home.
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Additionally, I would have to do another respiratory test each time with a device that I can't remember what it was called. It had a long clear, plastic balloon on one end. The tech would put some kind of chemical in it, and I would have to breath in and out until the balloon filled all the way up. Then, he or she would remove the balloon and tell me to keep breathing. These exercises were surprisingly hard to do. Now when I blow on my spirometer, I can easily get it to the top. Then, I could barely do it. It was also very easy for me to lose count when trying to get my 30 breaths in or almost fall asleep or get light-headed, another thing I will attribute to all the drugs.
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Then there were the physical and occupational therapists. Oh man. In the spirit of keeping this post from turning into a small novel, I'll blog on them later. Stay tuned!
An interesting turn of events
Last weekend having a gigantic, scary-looking scar finally paid off. I 
was an extra in my friend Joe Harris' music video/short film called, "The Butcher of San Antone" for the band Tumbledown. I was one of the butcher's casualties.
Score one for the disfigured!
Here's a (poorly taken cell phone) pic of what my scar looks like now, for those of you wondering. It's healing very nicely, if I do say so myself. I've even been told (wink, wink, Matt & Joe) that it's kind of "hot" looking. My thoughts? Tough, sure. Impressive, maybe.
Either way, there's a good chance that I can always win the my-scar-is-bigger-than-yours contest. There are contests, right?
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