On September 4th, 2018, around noon, I was sitting in the parking lot getting ready to walk in for my therapy appointment. Before I could get out of the car, you called me. I don't remember what the conversation was word for word, but you told me that you "couldn't see out of [your] eye". I figured maybe you had just woken up and didn't rub your eyes enough. I said, "um, okay." You proceeded to tell me you spoke with your eye doctor and his office and they wanted you to come in to be looked at. (You'd had an appointment with him a week prior where they gave you an eye patch. They had checked the pressures in your eye but established nothing was wrong when it came to your glaucoma.) You told me you didn't want to drive since you couldn't see out of your eye and needed me to come pick you up. I told you I was about to walk in for my appointment and I asked you if it could wait. You said you had just woken up and needed to shower and to let you know when I was finished.
I finished with my appointment and texted you back to tell you I was done. I drove to your apartment (I was only <5 minutes away) and you got in the car. We drove to your eye doctor's office. They called you back and had a look at you and I waited in the lobby. After about 15-20 minutes, the eye doctor asked for me to come back. He demonstrated a vision test for me showing me that you could not see out of your left eye. At that point in time he had instructed his secretaries to track down Dr. Webb as they said he may be on call at Florence or Ft. Thomas. We never found out where exactly Dr. Webb was but the eye doctor instructed for me to take you to the emergency room and let them know that Dr. Webb knew you were on the way. He gave me a post-it note with his contact info to give to the ER. We got back in the car and drove to St. Elizabeth Florence.
We arrived at St. Elizabeth Florence. You were having the hardest time walking. I don't think it was from the stroke but more so because of your vision (I'm not sure). I eventually walked in and grabbed a wheelchair and wheeled you in. We checked in at the desk. They called you back and took vitals, asked you what you were experiencing. (Couldn't see out of left eye - like looking through a straw / saw two ceiling fans) After that was done, they put us in an exam room.
We waited in the exam room where they took you back for a CT. I can't remember if this was with or without contrast. However, that came back and they told you you'd experience a "small" stroke and they would be admitting you.
They admitted you and thus began your time at St. Elizabeth Florence. I didn't want to leave that night. Mainly because you told me about how Grandma Nalley had a stroke and ended up in a coma so I convinced myself if I left that was going to happen to you. But you were more concerned with the fact that I had to move to my new apartment the next day. Before all of this happened, you scheduled for movers to help me with my big furniture. On September 5th, I spent the day moving out of my apartment to my new one all by myself. I visited you later that night to tell you about it. By September 6th I was completely out of the old apartment.
I also posted on FB about what happened to you. LOTS of your friends asked about you. I definitely didn't do as well of a job keeping everyone posted but I just tried to update anytime something big happened.
I sent another update to Facebook for your friends and family. The doctors advised you'd had a "right temporal stroke" and Dr. Webb classified it as being related to the MELAS. At this time, you had an IV hooked to you with infusions of arginine (which we kept calling 'Argentina'). They believed this would help you to regain sight in your left eye and it did. Slowly.
On the afternoon of September 8, they (St. E Florence) discharged you. During your time in St. Elizabeth Florence the biggest issue you had was with IVs and being stuck. At one point instead of walking out of the room like I do with needles, I came in and held your hand. We did FaceTime with Luke too which you enjoyed. It helped to calm you down a bit but not a lot.
That afternoon we also went to HealthSouth, located behind St. Elizabeth Edgewood. You were put in one of their newer rooms. When we first came in there was no telling when you were going home. You would have to go through several rounds of physical therapy, occupational therapy and speech therapy to recover and regain strength from your stroke.
While you were in HealthSouth, I would work in Hebron and then drive straight over to come see you. We both agreed I could take a break on Mondays and Wednesdays since that's when I volunteer. You watched a lot of Law & Order SVU. I drove you crazy with that grabber thing they gave you. And your walker. You had a nurse named Jim you really liked. I brought you clothes and washed your clothes multiple times for you. I'd also stop by your apartment to get the mail and take the trash out for you because you were worried about it. I helped you fill out the sheets they had for what you wanted to eat each day (breakfast, lunch, dinner). There was some kind of fish dinner they had that you hated and I actually ate (it was bland but not that bad).
I sent another update to Facebook for you. At this point you were doing really well with your therapies. You were getting to the place where when I visited you at night, you'd wanna leave the room and go on a walk with your walker. You had an estimate discharge date of September 21, 2018. The staff at HealthSouth asked me to attend a meeting on Wednesday, September 19 to talk about your progress and everything that's gone on as well as what to expect after being discharged.
Your discharge date was confirmed for September 21st between 10:00 am and 11:00 am. You and I sat with your case manager, physical therapist, occupation therapist, and speech therapist at the 'Family Meeting'. The physical therapist said that you're doing great and wants you to be active when you're home. All you needed is a little more confidence and she could see you going without a walker and using a cane. She also advised for no stairs.
Occupational therapy declared you as "independent" (HMMMM....) in your room that morning and you could do all self care activities by yourself. (No more needing a nurse to come in and watch you shower which you hate) Her only reservation was no cooking on the stove unless someone is with you and they were also concerned with your insulin shots too.
Speech therapy said everything checked out and they had the same reservation about your insulin. You came home with a walker, you'd need some adjustments for your vision (larger text on your cellphone, etc.), new medication, and new plans for driving and grocery shopping (i.e. ClickList, no driving).
Today I drove from work to HealthSouth before 10 because you wanted to leave as early as possible (you were going a bit stir crazy). There wasn't much to it. We waited on the "doctor" (the one at HealthSouth) to check you out as well as the nurses to get everything ready for you to go. You had a balloon that said "It's My Independence Day".
We left HealthSouth and I figured for a treat we would go to Bob Evans. You hated the food at HealthSouth and were never really full so I took you for breakfast. It was probably a little much for an adventure but I'd say you enjoyed the food. You struggled a bit with eating. You didn't eat very fast. I was done with my food before you but I sat and waited while you finished. I paid for breakfast, bought you a loaf of banana bread, and we went back to my car.
Then we went back to your apartment where I helped you get settled. I sat in the napping chair and set my laptops up so that I could work. You felt a little lost trying to navigate the place but you were walking around like you'd never even left. You were up, walking, you were energetic. Later that day we had pedicures scheduled. You'd had this planned way before the stroke to celebrate my 24th birthday. We went and I giggled as always. I decided on a dark red color for fall and you approved because it wasn't black. You won't believe me on this but you picked neon green. You thought it was hilarious. I didn't like the color but I told you to go for it if that's what you wanted and you did.
We came home from the pedicures. I once again made sure you were settled in and I was concerned. Originally I was going to stay the weekend with you but the smoke in your building was starting to make my allergies act up and you seemed to be doing really well for being discharged. We talked and you agreed I could go home. I missed my apartment and I told you that all the time at HealthSouth and you'd say "I know you do." You asked me about my apartment a lot at St. Elizabeth and HealthSouth. I left around 8:00 pm.
I made a joke the night before that if I didn't hear from you by 6:00pm the next day I was calling the cops. I'd woken up in the afternoon from sleeping in, at my apartment. You hadn't texted me. I wasn't worried though. You told me the people at HealthSouth told you sleep was the best thing for you.
Funny enough, sometime after 6 you texted me. You said your head had been hurting and you had just woken up. We texted for a bit. Nothing seemed concerning, just that you were waking up. You stopped texting me sometime after 8. I can't remember what I said but I know I asked you a question and you never responded.
I'd call you Sleeping Beauty if I hadn't been so worried. I was texting Luke back and forth about not hearing from you. We called you several times that day and hadn't received an answer. We were both really worried about you. I left your keys with you so there was no way for me to get into your building. I would've shrugged everything off but all I kept wondering was if you had taken your insulin, your medication, had you eaten? It was quiet all day.
Sometime after 6 again, you texted me. Then you called me. You told me you couldn't see. It was weird. Even talking to you on the phone was weird. I think you said something about not being able to find your neck loop. You seemed irritated. I offered to come over while I was on the phone with you. I wanted to come over. We were supposed to get your prescriptions for Arginine. And do some grocery shopping together. That was supposed to happen on the 22nd but like I said, you'd been sleeping. At some point while you and I were on the phone, I think you thought you'd hung up. But you didn't say bye or anything. I could hear noise in the background but you weren't saying anything. I sat on the phone just listening for about 5 minutes. Then I hung up.
I texted Luke back, this time more worried than before. I kept asking him if he thought I should go over to your place. But my biggest concern - HOW DO I GET IN? I drove to your apartment. I parked on the side of the building where I could see your windows. It was dark. I grew even more worried. Immediately I thought, she probably hasn't eaten anything. So I walked over to Kimmy's. Not the best place for groceries but I bought cookies and chips and coke. Things I figured would hold you over and help if your blood sugar was low. All I kept thinking about was you were in danger. Danger of a super low blood sugar. Someone told me a story one time about a relative of theirs dying because of unattended low blood sugar so of course I assumed the worst.
Luke and I kept going back and forth. Of course being in Lexington and not where I was, he didn't know what to do and I don't blame him. I can't imagine how hard it was for him. I apologized for blowing him up because I know he hates it but it was serious. For whatever reason, the option of going home and assuming you're okay was completely out. I tried calling you again. Texting you. I remember texting you and saying "please let me in. I'm outside". You keep your read receipts on so I could tell you weren't looking at your phone. I texted Ashley. I told her I was freaking out.
My biggest concern was you'd hate me. Or be mad at me. I didn't want to go back to the hospital. I had work the next day. Not that I was more concerned about that, but I figured you were on the right track. Nobody at HealthSouth told me I HAD to stay with you over the weekend. Maybe I made the stupid move of letting you go by yourself. Plus, I didn't want to call the cops just to get into your apartment. That seemed outrageous. But lo and behold, I did. I called the non-emergency dispatch line for Covington. I told them the abbreviated version. You had a stroke. You were discharged. You were fine on Friday. You slept in on Saturday and that was expected. But now I was worried. You're diabetic. You need insulin. You need sugar but also substantial food. They told me they were sending cops right away. I met them at the front of the building. Someone was letting them in and I ran up to them introducing myself. We got on the elevator and went to your door. It was a woman and a man. They asked me questions about you. What had happened? What's causing me to worry. I told them you slept excessively over the weekend. The woman rang the doorbell even though I told her it was connected to the lights and you'd freak out. But they figured that might help. Then the man rang the doorbell. We heard you yell "I'M COMING!" They rang the doorbell again a few minutes later. We heard you say, "I KNOW ALREADY!" I started yelling. I said "MOM, IT'S ME. IT'S NATALIE." No answer. "MOM!" No answer. The male cop called in the fire department because they had the master key. They showed up eventually and unlocked the door to your apartment. Your place was dark. No lights were on. I turned the front hallway light on, didn't see anything. I yelled, "MOM!" I turned a lamp on. I found you standing against the wall by uncle Dale's pantry cabinets. You were shaking. You were crying. You had a "deer in the headlights" look when you saw me. You yelped. It's safe to say we scared you and I apologize for that. But I'd say it was necessary considering how scared I was.
By this time the male cop, female cop, about 3 guys from the fire department and maybe 3 or 4 more EMT guys were there. Your tiny living room was crowded. You were in hysterics. I tried to get you to calm down and explain what was going on. The EMTs kept asking if I thought you should go to the hospital. I said I didn't know. I said I was worried about your blood sugar and if you'd eaten or had anything to drink. If you'd taken arginine like you were supposed to. They asked me, "does she normally act like this?" I said no. I told them how you were told you could sleep for the weekend because you needed to heal but 24+ hours seemed a bit much. They made the call to take you to St. Elizabeth Covington to get checked out.
The EMTs put you on a gurney and carted you into the ambulance. I got in my car and drove to St. E Covington. I checked in at the desk and told the lady you had just been brought in. I was asked to wait in the lobby.
No more than 10 minutes went by and a nurse came out to get me. She said, "we need you to come back to your mom's room. She's refusing letting us take bloodwork and being belligerent". I walked back into your room and you were SCREAMING. I mean, unlike anything I had heard before. I dropped my keys and wallet and sat next to your bed and tried to get you to calm down. You kept telling me to explain to the nurses that you were fine, that you could go home. I went back to reciting why you were in the hospital and that I was worried. You insisted you were fine. They wanted another CT and a chest x-ray. They took you back and you were still kicking and screaming. They asked me to put one of those big weighted gowns on because I had to hold your hand going into the machine. Then they wanted me to hold onto your head because you wouldn't stop moving. Somehow they were able to get their CT and they put you back on the gurney. They had you do a chest x-ray. The only way they could talk you into doing it was telling you to "take a picture with [me]". So somehow I was in the chest x-ray too. We went back to the exam room and they still wanted me to talk you into bloodwork but you weren't having it. They stuck you more than enough in Florence and I think it was giving you a lot of anxiety. You didn't want to be back in the hospital after just being discharged and I understood. I couldn't talk you into the labs. You kept taking my arm and banging it again the metal rail on the bed. I asked you to stop because it was hurting. They said they were going to give you a shot of Ativan to calm you down but you only panicked even more. I held onto you while they gave you the shot and you flailed around so much you smacked my face. You didn't mean to. It was from how upset you were. Eventually it was making me upset and the nurse told me to step out of the room. I called Luke to tell him what was going on. We got on FaceTime and thought maybe that would make you feel better. Luke was trying to explain to you too why you were in the hospital and why you needed to be there.
About an hour or so later they determined you were just really dehydrated but they wanted to admit you for observation. They said your behavior wasn't normal and they were concerned about that. Your CT came back with no changes either and nothing concerning on the chest x-ray. You were admitted to St. Elizabeth Florence again.
You were put in a room and stuck with an IV again. Luckily enough you were still on Ativan so you didn't fight it as much but I told the nurses you might. A doctor came in to see you and reviewed your labs, CT and x-ray. Honestly the conclusion was you were dehydrated. You had a little bit of lactic acid build up but they said that was probably from the dehydration. I spent the night with you in the hospital. You were discharged sometime that afternoon.
So I brought you back to your apartment. THIS TIME I was not leaving. If I'm being honest, yeah, it sucked. I made the joke that my new apartment was a $735/month storage unit. You didn't really find that funny.
Over this course of time, you completely lost your vision. Both eyes. You couldn't see a thing. You would tell me "it's dark". I was worried. And I beat myself up too because I felt like a lot of it was my fault for not staying. Plus I don't have a medical license so how was I supposed to know? I'd have to walk behind you in your apartment. I'd say "straight", "left", "right", "sit". I had to make you breakfast. Those burritos. I had to cut them up for you. I'd have to tell you if you ate all of them. In the beginning you didn't eat a lot. We'd argue about that and get upset with each other. You'd hit your toes on a lot of things walking. You used to tell you were in the living room by feeling Grandpa's blanket rack he made. Or Dale's pantry cabinet. I put your medicines together just like I do today. I originally printed out those labels so you could do it yourself until your vision went downhill. I'd make your frozen dinners for you. Usually I'd have to help you find the fork. I used to have to guide you with the food. You slept a lot. On the couch. In your room. You went from using your phone with the larger text during HealthSouth to not using it at all. It took me awhile to figure out but apparently your HomeHealth company was calling you. I was struggling to juggle everything and get that scheduled.
Nothing seemed to be getting better. You'd get up in the middle of the night and walk around. I decided to hold onto your keys to avoid calling the cops every time I needed to get in. I'd go home and come back in the morning for work. I found you one time lying in the floor by your bed, covered in your comforter. Another time you were lying underneath Grandpa's blanket rack in the middle of the living room. Another time the ottoman to the napping chair was pushed all the way up to your apartment door. When I slept over one night, you knocked the TV over in the living room. You knocked your grandfather clock over too. You somehow managed to change your shirt sometimes. It would be backwards. Or the right way. You had accidents too (won't go into detail).
Some people kept recommending getting you into a nursing home. I know how you feel about that. I know how I feel about that. To me, that would be like putting you on Death Row. To you, that's a death sentence. All I kept thinking about were our weekend lunches and how I wouldn't get to do that anymore if you were in a nursing home. No more birthdays. Thanksgiving. Christmas. Dad told me I could call him. I kept wanting to do that but I didn't know what to say. I try to avoid talking about you to him and vice versa. But it was very nice of him to say that. Made me feel better. I called Aunt Colleen. I told her about my thoughts. How I was worried about you going to a nursing home. I didn't want to make that decision. I cried on the phone talking to her. She can tell you. At the end of the call I had decided we were going to try every option I had before putting you in a nursing home. So I got your Home Health scheduled.
You should know, Luke, Dad, Colleen, Grace and Ashley were my rocks through this.
You probably don't remember, but I would lie on the floor in your living room. You'd ask me what I was doing and I'd say "reading the Bible". I know, right? Me? Bible? Why?
Maybe you've always known this but I used to read the Bible when I was younger. When I'd be stressed about your problems. Like working at DG. Or taking care of Luke. (Not that that's a problem, you did a great job and look at who he is today. Pat yourself on the back) I told Grace I'd been reading the bible. I read a lot of plans on "anxiety" and "depression". Matthew 6:34 is one of my favorite verses. Says not to worry about tomorrow because there's enough to worry about today.
I was messaging her and I told her I wanted to go home. I missed my apartment. She told me that God has a plan and I need patience. I made the joke and said "okay but when you pray tell your homeboy Jesus I miss my apartment". She made a few more comments but brought me to tears by saying "You are doing an amazing thing and God sees you". She then recommended reading the Book of Job. It was such a good read. I felt like I could relate a lot as well and Job 3 spoke out to me a bunch. Just with how I felt at the time.
I believe this was one of the days you knocked something over or had an accident. I'm not sure. But something was testing me. I can remember after tucking you in I did something for the first time in forever... I prayed. I know how you feel about that. But just keep reading and hear me out if you could. I prayed. Maybe it wasn't the right thing to say but I did tell God I missed my apartment. I told God I was worried about you having to go to a nursing home and I couldn't do that to you. I couldn't make that decision for you. I told him I wanted to go to church. I basically just prayed over and over for you. I cried.
Today was a day that went by like it normally did but I had something new going on around 5:30. I helped you get your pills, made your breakfast, sat and talked to you but you also slept some too.
Sometime around 4 I asked you if it would be okay for me to leave for a little bit to go to church at 5:30 and then come right back. You agreed to it. So I went.
I went to 7 Hills Church in Florence. Only because I knew people that went there. Not on a friend basis but I heard good things about it and had been meaning to try it. I walked through the doors and I'm not kidding when I say I almost walked out. The place was huge. You wouldn't like it because you're a country mouse. It's definitely not like Grandpa's church. Or Aunt Colleen's. I was making the decision on whether or not to stay and a woman came up to me, told me I looked lost. I told her I wanted to go attend service but didn't know where I was to be honest. She asked me a bit about myself and was so amazed I drove to the church from so far away. She finally showed me where the auditorium was. I sat down as far away from everyone as I could. There was worship and then the sermon.
I'll be honest, the message was confusing. Probably because I was just dropping in out of nowhere. It spoke to me a lot but also had me scratching my head. But I'll give you some of the notes that stuck out to me given the situation:
I'm stopping on the day you gained your vision back, mainly because that's where it's marked for me that you don't remember.
I know how you feel about religion, but I truly have no explanation for you as to what happened with you. Why you were better being discharged and went to a straight decline when you came home. You went from gaining vision back in your left eye to having no vision at all. Nothing. Like you went permanently blind. We even established in the hospital that arginine was doing the trick for your vision. I had been giving you arginine and out of nowhere your vision was gone. Maybe it was the eye drops. Maybe the arginine had to build back up in your system. Maybe dehydration didn't help. But I believe that prayer helped too. And going to church. It's been a comfort for me. I believe God answered my prayer and I couldn't be more thankful. I thank Him everyday for your progress and I thank Him for you. For the medical treatment you've received and still receive. That your vision is almost completely back.
You can use your phone again. Make your breakfast, your lunch and dinner. Get a snack. Do you remember me giving you insulin before? You can do that on your own now. You can navigate your apartment. Without me behind you to direct. You can watch SVU. Read the closed captioning. Use your useless computer. Text Luke. Text me. Put yourself to bed. Get your clothes out. Put them on. Shower! By yourself! You even brave trying to cook. But I won't tell anyone (haha). You can remember when your bills are due. I spent my 24th birthday helping you pay your bill to State Farm. We kinda messed that up but still. Everything stayed in order. You can remember doctor's appointments. Maybe with my guidance but better than before. You don't sleep ALL THE TIME.
I know you want to be 100%. More than anything I want that for you too. If I could hit a button to fix everything you know that I would. We'd go back to weekend lunches every weekend. And walking Crestview Hills until your legs hurt. I loved doing that with you and loved you before and I love you today too. I love seeing how fast your progress turns out. I love making those mental notes and telling Grace or Ashley. Or Luke! I love telling Colleen how you're doing. Colleen told me she'd been worried because you hadn't posted on Facebook and hearing that made me sad. I love that you're back on even when you hate it sometimes, and you tag me in random articles. I love getting texts from you even if I don't always respond and you send me 5 or 6 messages back to back.
I know you're upset because you want to drive. You want to grocery shop. I know it doesn't seem like you're independent because you rely on me. I can't buy you a home like I'd like, or change your hearing to 100%, or hand you a million dollars but you know I would in a heartbeat. So for now, I'm doing what I can do for you. I'm helping you with what you need. I'm hoping I do a good job of that. You should be very proud of yourself. Proud of how far you've come and be faithful in how far you'll go. I don't know what I'd do if your vision was still completely gone. I'm sure my tone wouldn't be as happy. But it's nobody's fault. Plus I'll take this. A million times over I'll take you and your fast progress and taking you to the doctors or getting your haircut.