Stroke Recovery 101

October 11, 2019

Dr. Pennell's Office

Today I took you to the eye doctor to go pick up your glasses. While we were on the way to pick them up, you were talking to me in the car and mixing up your words (examples: you said "bub-dubs" instead of "B-dubs"; you were trying to say "percentage" and said "precision" instead). It didn't seem to bother you or rather, you didn't seem to notice. I shrugged it off at first thinking you had just woken up and were a little tired. We went about going inside and getting you fitted for your glasses and something about your speech still seemed off. I had mentioned to you that you were mixing up your speech and it eventually caused for you to become embarrassed and even a little agitated. I kept telling you I was just concerned was all and I'd be more concerned if you were actually slurring your words (I added that that would be the time for me to take you to the hospital)

October 12-13, 2019

Your Apartment

I had been to your apartment twice over the weekend but can't remember what for (I believe it was to fill your pillbox). I know I couldn't say if you'd taken your insulin or eaten much and you were still mixing up your words about but I figured I'd let it go. Even your text messages over the weekend weren't making any sense. In my mind I kept thinking I may need to call Dr. Webb about your situation but I'd wait until Monday.

October 14, 2019

Your Apartment

I had to work today and was growing a little concerned that I hadn't heard from you. I kept telling myself you were probably just sleeping in late like you usually do and to stop freaking out. I didn't have time to call Dr. Webb's office but Luke and I had been texting each other about my concerns with you. At 4:46PM I texted you a heart emoji and you texted back two minutes later. Three text messages: 'Help me', 'Help me', 'I can't find anything'. I instantly became panicked and figured something was wrong, I assumed maybe you had a low blood sugar but I couldn't understand what was going on. I asked if you were okay and you texted: 'No I don't know anything'. I texted you to tell you I was headed to Children's but I'd stop at your place and to unlock the door so I could get in. You texted me while I was driving saying 'Nevermind I'm okay' but I showed up at your place anyways. I got there at 5:23PM and texted you that I was in the building. I tried texting you several times, calling, knocking and you weren't answering. Eventually I decided to ring your doorbell and you answered. You looked like you had woken up and you said "I told you never mind." You looked weak and like you had slept all day. You checked your sugar earlier in the day but told me you couldn't remember if you had or not. I forced your to eat Pop-Tarts and drink some coffee. You skipped your morning pills since you had just woken up. The sun was shining through your blinds and you said it was hurting your head really bad. You didn't know what time it was and when I told you it was around 5:30PM you asked me if that was daytime or night time. Even with the sun shining in you couldn't tell what time of day it was. I made a list for you asking that you take a shower and get your insulin but you couldn't understand what insulin was or what it was used for. We got into an argument about how to give yourself insulin and I told you to forget it. I told you I was going to go to Children's and call Dr. Webb. I left your apartment and got in my car. As I started to drive, I called Dr. Webb's office and left a message for him explaining what was going on.

Cincinnati Children's

Dr. Webb returned my call and I went over everything that had gone on since we went to pick up your glasses. Off the bat he said that given you were having increased confusion and a worsening headache, he wanted you to go to the hospital to get checked out. I told him you weren't going to like that response and he stated he was aware but that we needed to make sure you hadn't had another stroke. I agreed and hung up the phone and continued my volunteering shift.

Your Apartment

I came back to your apartment with some food from the hospital cafeteria since we discovered earlier that night that you needed a ClickList. It seemed off to me that you hadn't requested anything from me in awhile. You were sitting on the couch eating Eggo Waffles and I sat next to you and gave you the food I brought. I told you I talked to Dr. Webb and that he wanted you to go to the hospital and you weren't happy about it at all. It took me about an hour and a half just to convince you to get in my car and go. You cried and you were upset, telling me you were worried you were going to be in the hospital for a month. I told you you could go or don't go - you're an adult woman and can make your own choices. You asked me my thoughts on which hospital to go to and we picked St. Elizabeth Edgewood.

St. Elizabeth Edgewood - Emergency Room

We packed your walker and your purse and checked into the emergency room. They gave you an arm band and took your vitals and eventually we made it back into an exam room. I had given them the story of what I saw with you secondhand - mixed speech, confusion, worsened headache. I told them I spoke with Dr. Webb who is your neurologist and he had advised on taking you to the ER to get checked out. Dr. Geers, the emergency room doctor, said that they would need to do labs, a CT and an MRI to get you checked out and it would required having you be admitted. That took another 10-15 minutes to sit and talk to you about and convince you to do. Eventually you agreed and they drew your labs and took you back for a CT. The MRI couldn't be done until the next morning so they set you up for a room on the 1A Unit.

We got you up to room 1119 on the Neuro Unit (1A). They managed to get you situated and you had an IV but never made it into a hospital gown. The nurse asked me if anyone told me about you having another stroke. I said "no" and asked if the scans showed where you had your first stroke or if this one was new. She said she wasn't sure and she'd have to get the doctor to look at the scan and let me know. At that time I just assumed nothing new had happened.

October 15, 2019

St. Elizabeth Edgewood - Unit 1A

I spent the night at the hospital with you and slept in the folding chair. We got your breakfast ordered and the nurse had been in to check your blood sugar, give you your fast acting insulin shot and Ativan. By the time the food had come up and and you got about 3 bites in, hospital transport was ready to take you back for your MRI. The nurse told them that you had just been given breakfast and wanted to know if you could hold off on the MRI until you ate. They said since you had taken your Ativan that they wanted you down right away so it would still be in effect for the scan. You took a couple more bites and then transferred you from the chair to the stretcher - you were wobbly. I stayed up in your room and got your breakfast reordered and waited for you to come back. Minutes passed and your second breakfast had been delivered and eventually grew cold. Your nurse came in and told me they were having trouble getting you to put your hearing aids in and they needed my help. I put my shoes back on and walked with the nurse.

We walked to the vascular department where they had planned on getting an ultrasound of your neck to check for blockages. I entered the room to find you lying on your back - your face covered in cuts/scratches and a giant knot on your forehead. There was blood in your nose and about 5 nurses in the room, 3 outside and a chaplain. I had no idea what happened. They told me that you had tried to get off the stretcher and as soon as you did you fell flat on your face. One person said you mentioned needing to use the restroom. I bent down and your hearing aids were already in and you looked up at me. I had a hard time looking at you because none of this was supposed to happen. They had to put a board under you and put a collar around your neck in case you had any additional injury. They put your back on the stretcher and waited for phlebotomy to come down and do more labs. I was finally getting to the place where I told them to do finger pricks instead of sticking your arm each time. They eventually came in and you were taken to X-Ray and CT for more scans due to your injury

The x-ray and CT showed no further damage/bleed to your head. We came back to your room and your food had been cold by then. The doctor came in and explained to me that you had had another stroke - a subacute left parietal stroke - which was what was causing the speech impairment and the confusion. Dr. Brown, who works with Dr. Webb, was going to be your neurologist that would come in and check on you. Eventually he came in after Dr. Connelly and the plan was 3 days of arginine infusions per Dr. Webb and then evaluate from there. Then, Dr. Brown left.

You were lying in bed and I was sitting in the chair across from you dozing off. Eventually I heard you ask me something about whether or not I'd get upset with you for something. We had ordered you lunch earlier but your nose was bleeding from your fall so you couldn't eat it and it became cold. I had ordered pizza for you as well which came up but we were still trying to get the bleeding down. I woke up and asked you to repeat yourself and you said if you asked me to go get the car and take you home, would I be upset with you. I said yes because your nose was gushing blood and we had just been told minutes before about your stroke. You kept insisting that we leave and didn't like it when I told you you were going to have to stay for 3 days for arginine infusions. You had a bed alarm on and got to the place where you swung your legs over the side and tried to get up. I had jumped up from my chair and grabbed onto you since you got out of bed and I didn't want you to fall. You started yelling my name and saying you were upset with me for not taking you home. Three nurses eventually came in and grabbed you and tried to put you back into bed. Each time you would push against them and try to force yourself back out and would scream my full name in the process. I had sat back down in the chair and started crying because there was no way for me to help you and I definitely wasn't going to take you home, even though I knew that's what you wanted. Eventually one of the nurses pulled me out of the room because you were screaming and angry and it was hard for me to watch.

For about an hour or so a nurse let me walk around the hospital with her. We walked downstairs to the cafeteria and she showed me the kinds of food they had. We went back upstairs and she grabbed a set of socks for me and a Diet Coke. She had me sit at a nurse's station far away from your room since you were still screaming. She left me alone to call Dad. I called him and cried and explained everything that had been going on. Eventually Dr. Connelly came to find me to let me know that the ENT specialist was coming in to see you and assess you for your nosebleed and put a balloon in your nostril to get the bleed to stop. Needless to say the nurse's station I sat at wasn't far enough and I could still hear you scream.

October 19, 2019

Tonight, Lizz brought us dinner from Cracker Barrel - chicken and dumplings! She even brought you a Coke Zero and a Diet Coke for me. You were getting tired of drinking Sprite. Like the angel she is, she helped feed you your dumplings and let me eat my dinner. She sat and talked to you for a little bit and told you about her daughter. You joked with her about how her daughter is probably in college by now.

October 22, 2019

I stayed the night with you as your combativeness was starting to go down. You were having a difficult time when it came to testing your blood sugar and being stuck for insulin because you didn't want to be stuck with needles. This correlated with you eating. Your dinner came in and you didn't want to eat because you knew if you ate, they'd stick you. You ate apple sauce and a little bit of a roll but ended up throwing your roll at the nurse.

October 24, 2019

The hospital called me within an hour after I had left in the morning stating that you were upset and yelling for me. They tried putting me on speakerphone to see if that would get you to calm down but it didn't work. The lady on the phone said she'd be calling me back later regarding getting you to rehab.

Encompass Health

The hospital called to let me know that an ambulance was scheduled to come pick you up and take you to Encompass Health next door. I had stated to the nurse that I was concerned with your confusion and worried about you going to rehab but the doctor stated everything you were experiencing was a part of the stroke. I went with his advice and drove over to St. Elizabeth. We rode over in the ambulance to Encompass and you were upset the entire ride. You were worried about getting stuck with a needle and the paramedics explained to you they weren't going to stick you. We got you into your room and checked in with your nurse. You were agitated with having to answer the nurse's questions and didn't want to cooperate. She had to take pictures of your injury from falling at St. Elizabeth which you didn't enjoy. You ended up calming down and ate some of the dinner that came in for you. Once you were done, you dozed off a little bit. I tried to write a Care Gram for the nurses at 1A. You woke up out of nowhere and began to take your gown off and the sheets off of the bed and threw them all onto the floor. I got you covered up and called your nurse asking to get more sheets and some clothes. They brought everything in and got you dressed but you were upset with the hospital clothes that they gave you. They gave you Ativan to help calm you down but you were sitting on the side of the bed still upset. The nurses got you out of your bed and into the wheelchair so that you could sit with them at the nurse's station. I got ready to leave and the charge nurse flagged me down asking that I stay and sit in the lobby to wait and see if the doctor wanted to send you back to the hospital to be re-evaluated. He never answered so I went home and you stayed with the nurses at the nurse's station.

October 25, 2019

This morning I had 3 calls with Encompass. The first one was the morning charge nurse telling me that you had breakfast and everything was fine and then you started getting agitated and hollering for me again. Call #2 was your case manager with a tentative (keyword: tentative) discharge date of November 8. She said that they put you through therapies today and assessed but they were very concerned about your mental state. Call #3 was your speech therapist who asked me questions about what I'd seen from right before the hospital, to the ER and to being admitted. She said right now you have a case of aphasia, confusion and even some hallucinating which would not correlate with the stroke. They ran a set of labs and tested for a UTI to see if there's an underlying infection. She said that speech therapy will work as much as possible to help you improve but it could take weeks and in some cases months. I stopped by tonight to visit you and you were sound asleep. A sitter had been assigned to your room to make sure you didn't get out of bed and you had been moved to a room closer to the nurse's station. I dropped off some clothes for you and talked to your sitter for a few minutes and left.

October 26, 2019

Today when I visited you were awake and sitting in the TV room. Eventually things escalated and you managed to undo your wheelchair seatbelt and got up. You were yelling and hitting/biting and they gave you an Ativan and took you back to your room. The doctor + neuro have decided not to go with scans and make the Ativan dosage regular everyday.

October 27, 2019

St. Elizabeth Edgewood - Emergency Room

Given the day you had before, I wanted to try and take a break from visiting since I left last night upset. Encompass called me to tell me you were being sent back to St. Elizabeth Edgewood ER for re-evaluation. You had pulled the fire alarm, swung a call light at a nurse and tried to stab a nurse with a pen. They tested you for a UTI and gave you Geodon again to get you to calm down. Your head CT showed nothing new and neuro and psych were scheduled to see you the next day.

October 28, 2019

St. Elizabeth Edgewood - Unit 1A

Psych came to see you today and put you on Seroquel but you didn’t take it until tonight. You were given Ativan and Geodon as well and had been combative earlier in the day so you were put in wrist restraints. You ate earlier today and tonight. Your mood was okay when I came in and took a turn about an hour in until you were given medicine. Your nurse said depending on how you do tonight they’d consider taking the restraints off tomorrow.

October 29, 2019

I visited tonight and you were in a better mood than I'd seen you these past few weeks. Your day nurse said you were agitated earlier and threw things but they’ve decided to keep the restraints off since it makes things worse (as long as you don't try to get out of bed). You took out another IV but they didn't put one back in. The nurse also said they gave you an antibiotic for a UTI. You ate breakfast and lunch but no dinner and you took your meds. You were chatty but still pretty confused.

October 31, 2019

You were doing a lot better today! I spent the night at St. Elizabeth last night and your nurse said you did well - only small issues were trying to get you to take Seroquel in the morning and you didn’t eat dinner. You woke up twice last night confused and anxious but they gave you Ativan to go back to sleep. I visited tonight and your nurse said the doctor continues to see improvement. You ate 3 meals today and you took your meds too. PT/OT/ST assessed you and recommended you still do rehab so a referral was sent to Encompass and Gateway Rehab. You've been cooperative and talking to me about wanting to go home and take a shower.

November 2, 2019

Your friend Jan visited you today and brought you a little goodie bag. I know it brightened your day. You were so excited to see her and kept asking me about where I "found" her. She stayed awhile to talk to you and then took me out for lunch.

November 3, 2019

I slept in this afternoon and shortly after getting up the hospital called asking me if I was coming in because you were upset and anxious most of the day. Your behavior is still good but your nurse said you're having a little more confusion than usual today. The nurses will monitor overnight and report to the doctor when he comes in tomorrow. A pre-cert has been sent to Gateway but I'm waiting to hear back from the liaison. Encompass would not agree to accept you back.

November 4-5, 2019

Gateway Rehab

You were moved from St. Elizabeth Edgewood to Gateway Rehab as of last night (11/4). You were checked in by the time I showed up and it sounded like everything went well with riding in an ambulance to getting into your room. Gateway called me today to have me come in and answer questions and sign registration forms because you weren't understanding what any of it was for. Later in the day a case manager called twice and stated that whenever you go home, someone is going to have to live with you. The first call he said that it would be "temporary" and the second call he told me that PT did their assessment and said you cannot be left alone. I went tonight to visit and you were pretty chatty, a little confused. I kept mentioning to you that you have a birthday tomorrow and I'm not sure it registered with you. They moved your room and the nurse told me it was to put you closer to the nurse's station because you kept trying to get out of bed again.

November 8, 2019

Speech therapy at Gateway called me and asked me questions about your baseline. I gave them the rundown and the therapist told me you were questioning why you had to do speech therapy and couldn’t stop asking to go home. They asked me to bring in some pictures to use in therapy and to maybe even comfort you. Minutes later your case manager called me and reiterated that PT still showed you'd need 24 hour care. They mentioned though that they were having difficulties getting you to participate so they asked me to go in and see if that would motivate you. You continued to ask me when you were going home and you were frustrated about being at Gateway. Luke came over and we joined you for PT and OT and talked to physical therapy about what we’ve seen these past weeks. You finished up with therapies and Luke headed back home. I stayed with you for dinner and you went to bed around 6:30pm so I left. At about 9:55pm, Gateway called me twice but I missed it and texted Luke asking him to call. He said they were having issues with getting you to take medicine and you were agitated. Luke said they’d call him back if they needed one of us to come in but no one called the rest of the night.

November 9, 2019

St. Elizabeth Florence - Emergency Room

This evening I was at church getting ready to serve and Luke was at home. Gateway called me, then Luke called me and then he texted me. I tried calling Luke back and then called Gateway who advised they were sending you back to the emergency room. Their report was you were back to being combative - throwing food, yelling and ended up in another patients room - and the physician decided you need to be evaluated again. Luke and I met in the ER where they did an X-ray and a head CT. They took blood which was a fight and attempted to do a chest CT but you wouldn’t stay still. You yelled and screamed, told me you hated me for doing this to you (even though I know it wasn't you). They gave you Geodon and took you to your room. All we found was your heart rate was high which the ER doc said could be signs of an infection. A UTI had been ruled out based off of your test results. They tried to take blood for cardiac enzymes but weren’t able to get it and would try later tonight and attempt a chest CT tomorrow.

November 11, 2019

St. Elizabeth Florence - 4NW

Dad came up from Florida given everything that had gone on during the weekend. He felt bad about everything and wanted to help us out. The chest CT couldn’t be done yesterday since you wouldn’t stay still. Neuro increased your Seroquel and cardio decided they didn’t seem to be concerned regarding your heart since your heart rate has been raised in the past. They were able to do an echo yesterday which made you a little anxious and wanted to try the chest CT again but you weren't having it when they flushed your IV and you became agitated. Your moods were up and down yesterday and they were going to see how you do with more Seroquel.

November 12, 2019

Dad went with me tonight to visit you and something had changed. You'd been sitting on the edge of the bed and had zoned out. The nurses were in trying to speak to you but you wouldn't say anything or respond. They had advised you wouldn't take your pills or eat during the day. I told the nurses you were acting weird and they agreed with me. I told them that the last time I had seen you act like this, you were having a seizure. The nurses said they were going to take note of your behavior and report it to the doctor. I was able to feed you a little bit of mashed potatoes and a Mighty Shake.

November 14, 2019

Dad and I came back to visit you tonight. From the update we were given nothing had changed. You weren't eating anything or taking pills nor were you responding to the nurses. You had your eye on dad and kept mentioning that your grandpa was taking you to see your dad. The doctor came in to talk to us and said extended care was definite and we may need to look at putting you in hospice/palliative care. I stood there and cried. Hospice has always been the unspoken "time is up" deal to me. I couldn't believe how fast everything was happening and what was going on. I told Ashley that earlier in the week you walked to the bathroom and you ate food and now it was a complete 180. The doctor put the referral in for hospice.

November 15, 2019

We had a meeting scheduled with palliative care/hospice and Luke, dad and myself went to the hospital to visit you and meet with them. We talked about inpatient vs. at home vs. nursing home hospice. I cried a lot and stated you would not want to be in nursing home hospice. We agreed to put you in hospice as long as we could aim for inpatient. We visited you for a few more minutes and everything was in place for your meds to be discontinued and comfort care to take place. We got ready to leave. The hospital called later at night to say you were moved to 3NW

November 16, 2019

St. Elizabeth Florence - 3NW

Luke and I dropped dad off at the airport and stopped by to see you. Your room was dark, the nurses said you still hadn't eaten anything. Your breathing was shallow but you were still breathing. Every thought I had was "Is this it? Is this the last time I see this? Hear this? Feel this?" Luke and I left and went to get dinner.

November 17, 2019

I woke up and sat on my couch, playing on my phone. The phone rang, it was the hospital and my heart dropped just as it usually would. I ran through the routine of wondering "Is this it?". I answered the call. The woman on the other end asked for Natalie and I told her that was me. She said your vitals were getting bad and it may be best for family to come in. I began panicking and the knots piled up in my stomach. Once I got off the phone with her, I called Luke. I told him we had to go to the hospital. I went to pick him up. We switched cars, I guess maybe he figured it was best I didn't drive. We got to the hospital and I was already in tears before getting into the building. Dad had called while we were in the parking lot. We went into your room. Your eyes weren't moving like they did last night, neither were your legs. Your mouth was open, I could tell you were dehydrated. Your breathing was worse - 5 seconds between each breath. I sat down and so did Luke. I wanted to hold your hand but it was purple and cold and I freaked out. I grabbed your shoulder and rubbed it. Luke and I sat there in silence. Your breaths moved to 6 seconds in between. Then 8. Then 10. 15. Eventually 20. The knots kept piling in my stomach. Luke and I said we loved you out loud. I had counted to 20 and kept counting, realizing you hadn't taken a breath. You had made a small gargling noise. I looked over at Luke, scared. I said, "is she gone?" He didn't say a word. 20 was turning into 30. I looked at Luke again. I asked him to go get the nurse. He stepped outside and couldn't find her so I hit the call light. 30 was turning into 40. I let go of your shoulder, afraid of what I already knew. I stood as close as I could to Luke. The nurse came in and checked your vitals, she came back up to us and said she needed to grab her charge nurse. Minutes later the charge nurse came in, repeating the steps of the nurse before her. Her and the nurse walked up to Luke and I and she nodded, apologizing for our loss.