I’m not exactly sure what to say or how to describe how I have been feeling today, it was a whirlwind of confusion, hope, sadness, and great happiness. What I do know, is that when Cory drove us home from the hospital, I was crying. I didn’t think I would ever ride in the passenger side of our car with the windows down and him driving while we sang along to Kesha ever again. If you would have told me a week and a half ago that this was in my near future, I would have said you were crazy and that dreaming won’t get us out of this mess.
 
Cory was discharged from the hospital around 6:30/7pm today. He has a new list of medications to take, some to change, but ultimately his blood pressure is somehow withstanding the medications for heart failure that it couldn’t tolerate last year. And of course, we don’t know why. His heart rate is staying in the 80’s, something it wasn’t able to do last year, and all of his levels are just perfect. Actually, I believe they said something like “his blood pressure has never been this good, its exactly where we want it to be”.
 
One of my friends told me today that if they ever doubted miracles before, they never will again. And he asked that I do the same. I do believe in medical miracles, and while I do not share the religious beliefs of many of you that prayed for him, I thank you with my whole heart. I would also like to give credit where credit is due. Cory has a will to live unlike anyone that I know. He wants to be here, he wants to be in our home, he wants to be here with me and with you. I think we were all really afraid of losing Cory, but I think he was also not ready to lose any of us. There are too many memories to be had that he wasn't ready to give up on yet.
 
Cory is not only home, but he does not need dialysis anymore. His kidneys are doing their job. And while his liver is a bit behind, it’s doing really well. I asked a doctor friend about why his liver and kidneys were damaged, and he told me it was because when he needed CPR his heart had stopped, and with that the blood flow stops, causing immediate damage to the liver and kidneys. But, even with their decent resume and with no references at all, and even considering they tried to put in their notice, they took the job back with full force and are doing great.
 
Life is of course going to be different again, but it has been for so long that I almost don’t feel like I know any other way. But some things never change, Cory insisted that he walk out of the hospital again today. No wheelchair, no cane. He was going to walk out. And he did.[...]

My delay in updating has been because of a couple reasons. The biggest reason would be that Cory is conscious and can talk to me again. When I think about it, I feel like because I couldn’t talk to him, I had to talk to someone, and the writing about it almost made me feel like I was telling the story he couldn’t though this channel. The other reason is that time is just a funny thing and last night at 1:30am I was going to write one, Cory called to say goodnight, and then I just went to bed instead, which is a pretty good reason that I am happy to report.
 
Cory continues to improve, but very slowly. He has had speech therapy, physical therapy, ultrasounds, labs, and all the people coming in to see him starting as early as 4:30am. Something that everyone has been saying a lot is that he has his age on his side. We’ve met with the Heart Failure nurse practitioner, palliative care, and the social worker and have some answers.
 
Cory is still in the CICU and will remain there until he is off the IV medications. He is down to one except for an antibiotic due to a fever of 101.7 on Wednesday night. When I was there yesterday his temperature was down to 98.5. The medication he is on now is milrinone, which helps with “the heart squeeze”. He was taking mexiletine orally for that before, as I’m sure you all remember his alarm said “Mexican Drugs” every eight hours for him to take. He’s now taking that orally as well, so getting off the IV hopefully won’t be too long. He will also stay in the CICU until he can walk on his own. Because the CICU has one nurse for every one or two patients, they can help him get to the bathroom and stuff, but in a regular room it’s about one nurse for every four patients or so, so walking alone is important. Cory was able to walk to the door of his room and to his chair yesterday, but he needed assistance. They have said that his recovery will be very slow, there was even mention that he will need a cane to help him when he is discharged.
 
Which brings me to my favorite take away from the meeting with the NP and Palliative care. They kept saying “when you go home”. Not “if”, but “when”. He is on track for going home. It sounds like it will probably be at least a week, if not longer, but I will absolutely take that over “never”, or in the words of the doctors last Wednesday “he most likely will not make it out of the hospital”.
 
We also had some hard conversations about code status and he signed an advance directive, which was really sad and hard, but important to do.
 
The thing about all of this is, that Cory’s disease is progressing rapidly. His heart failure is getting worse, but they are setting us both up for how we can do this moving forward. If we follow all of the rules, Cory should be eligible for the list by December. He will have to take a bunch of tests again in the fall, as the ones he took in September are only good for a year. He will most likely be admitted for those tests because they can knock them all out in a couple days for someone who is in the hospital versus waiting months to get scheduled for them as outpatient.
 
The verdict on dialysis is still out, but I will say that this morning I talked with Cory and… they cancelled his dialysis today because his kidneys were doing so well! He said they think he may need another treatment in a few days, but his kidneys have decided to be up for the job! Dialysis was something that he accepted and we knew that it would be a big life change, but the idea of not having to deal with that is very exciting. If he needed dialysis three times a week, it would mean that they would put a port or something in his chest that couldn’t get wet, and he would not ever be able to go swimming. It would also mean that anytime we travelled anywhere, he would need to be set up to get dialysis wherever we were, regardless of where we were. Which also meant that he had to be okay missing four hours on certain days, which sounds like insanity if we were camping, but worth it if necessary. Cory will probably need one more round of dialysis in a few days, but we still aren’t sure.
 
Also very exciting, Cory has graduated to actual real people food! He has to eat in small amounts and slowly because his throat muscles need time to get stronger too. His voice sounds a lot better, I can actually hear him most of the time, and they have taken out quite a few tubes. He is off the arterial line, the central line, and the oxygen, so he just has the dialysis in his neck and one IV. All of which are really great steps to getting him out of the CICU.
 
To anyone who has been visiting, please keep going! To anyone who was wary about it before, he looks a lot better. And to everyone who saw him a week ago, it would be great if you could see him again now. It’s like night and day and although it was sad and jarring to see him like that before, it was really great to have the company for both of us. He does not remember anyone visiting when he was under, but I don’t think it’s because he doesn’t know you weren’t there. A few people have told me that just the presence of the people he loves really helps.
 
If you are thinking about it, just be aware that doctors and specialists pop in usually until 5pm, so you may have to step out. I do think visits shouldn’t be too crazy, because he does get really tired easily and the days are overwhelming.
 
At this point, I plan to be there from around 11am/12pm to 3/4pm. Now that I can FaceTime him when we wake up and again at night, I have decided to bring some routine back into my life. While being at the hospital is important, being at home is important too. I swept, mopped, vacuumed, did dishes, went grocery shopping, did two loads of laundry (which I have yet to put away) and actually made my own dinner last night, and I need to keep doing these things for our home for my own sanity. I want to take time to paint and garden, and I need to remember to budget the amount of time I’m on the phone with friends and family too. I actually do plan to return to work this weekend, albeit for a very short time, but the normalcy and routine will be good for both of us for the next couple weeks that he’s still in the hospital. I do not plan to work any set shifts yet, I want to be able to just be at the hospital at any time if they call me. I also am having a hard time leaving Milwaukee (I was asked to come out to camp last night for family night) but just couldn’t get those late night calls out of my head.
 
I think that the trauma response to all of this will rear its ugly head over time to both of us, but acknowledging, understanding, and respecting what those are will just take time. Last week I felt like this was all a bad dream and that I would wake up and he would be okay. This week I weirdly feel the same; that this is all a good dream and I’m going to wake up and be without him. These things just take time.
Love you all,
Sarah[...]

Cory always has this thing he says to me, and even when we fight or get frustrated with each other he tells me “I love you more than anything in this world”.
 
Last night I facetimed with him, and he said it to me. And I just lost it. I was really, truly sure I would never hear him say those words to me again. We all know too well how often things can change suddenly and our whole world is just flipped.
 
Cory has been an anomaly to the doctors since day one. He just crashes with no warning, or he has fluid levels that are just insane, but his body doesn’t show any sign of it. He’ll get labs back and they just have no idea what is wrong. He’s also always been an anomaly to me too, but that’s just part of who he is. Maybe the anomaly worked in our favor this time.
 
Cory is not only sitting in his chair, but he’s talking, making sense, his levels all look good, and he is able to carry on conversation. His speech therapy didn’t go super great, but with being intubated that long they are not at all surprised. They’ll try again today so he can hopefully eat real food again soon. He is very weak, and he is just not allowed to drink fluids or eat food yet, his swallowing isn’t where they want it to be. He could aspirate on the fluids, so he has to settle for ice chips. He apparently is already trying to pull his first scam, by keeping the cup, letting the ice melt, and trying to drink it. He is as stubborn as he always was. (Audrey took away the cup he tried to hide in his bed, he is fine).
 
We are out of one set of woods for now, but we are not in the total clear here. Cory will be starting occupational and physical therapy today and it will be very frustrating. He also has an ejection fraction of about 10% and will very likely have defibrillations again. But we have made it this far many times, we can make it again. He’s ready for the fight.
 
I called this morning because I couldn’t sleep, and he’s officially graduated to a three hour dialysis instead of the twelve hour, which is another awesome step (I mean, its happening right now so TBD but it sounds like its going well). If he can handle the three hour it means he’s another step closer to leaving the CICU and heading to a regular room. If all continues to go well, he may be on regular dialysis three times a week.
 
One week ago today they handed me his wedding ring in a bag. Today I’m going to give it back.
 
Thank you to everyone who has called, texted, messaged, left cards, visited me and who have visited Cory. To my family that have been so supportive and can talk about silly things as much as the serious things, but mostly send animal pictures. Thank you to our other family, that travelled or contacted from Door County, North Carolina, Minneapolis, La Farge, Waukesha, Green Bay, New Orleans, California, Oklahoma, New York and of course, Riverwest and Bayview. Thank you to all the amazing people I work with and for, who have shown nothing but love and support.
 
I know there have been a lot of offers out there to me on a regular basis and even if I haven’t taken you up on them, it’s nice to know that I have so many people who are ready to help if I need it. Thank you to my camp family (which is surprisingly a lot of my real family too) that carried on what I couldn’t be there for. I miss you guys this week. I miss my work family too. I will say though, the hospital staff have been a little surprised at how many people who visit are in some way connected to The Clare. A few of them even plan to check it out sometime.
 
I don’t know what our lives are going to look like, but that’s really not important. One day at a time for now. I have a lot of up feelings and down feelings and all the in between, but that’s okay. Acknowledge the feelings, there’s no wrong way to deal with this, as my therapist is teaching me. Everyone would do something different, for all aspects of this ordeal, but that doesn’t make it wrong or bad. I’ve been trying to give myself the leniency to do what I need to do for me, without guilt or beating myself up for watching The Office for like the 1,000 time. Or for eating carry-out and letting the La Croix cans pile up.
 
I’m not sure if you guys knew this, but I used to LOVE watching Grey’s Anatomy, which I have not done since Cory was diagnosed last February. But over the last couple of days, one quote keeps popping into my mind. “In the darkness there is fear, but there is also hope”.[...]

Today was a good day. I’ve met with many doctors, nurses, and whoever and I was told that this is a rollercoaster. They were not wrong. There are ups, downs, and in betweens, there are maybes and nervousness, backwards and forwards.
 
I had a last minute meeting with my therapist yesterday, and she told me that there is no wrong way to deal with this. There are unhealthy ways, sure, but there isn’t a wrong way. Exhibit A, I laid in bed until probably like 3pm today. I was on the phone doing work stuff (loose interpretation of “work”) but I just didn’t get out of bed. I fed the animals, let the dogs out, and then just… got back in bed. That’s called avoidance, I didn’t want to go to the hospital and find out more bad news.
 
But I went. Chaundra, Abbie, Audrey, and my mom were there when they extubated him. He is off the 24 hour dialysis, he’s off the blood pressure meds, and he is fairly awake and responsive. Tomorrow they are going to try speech therapy to see how well he can swallow, and then we will hopefully be on our way to oral meds. If he can be on oral meds, he can eventually get out of the ICU. He is on a 12 hour dialysis over the night as a bridge to getting to the 4hr dialysis that may be his future a few times a week if he leaves the hospital.
 
Abbie and I made fun of his goatee that they shaved onto him to get stuff to stick to his face. I asked him to smile at me and he gave me this awkward weird smile that he usually gives me when he’s angry at me or frustrated with something and he smiles anyways. We did make a Guy Fieri reference and Abbie did ask him about Flavortown.
 
He is coughing a lot, the intubation is brutal, but he asked for his own suction and was holding it himself. His motor function is kinda off, but.. are you surprised? He cannot talk, the breathing tube really messes with that, and we don’t know his ejection fraction of his heart. He is currently on two IV meds for his arrythmias but again, hopefully can be oral meds soon.
 
There is so much to be said about what we do for ourselves. Chaundra drove today and when I got home I ate some food and then promptly fell asleep on the couch watching Armageddon. I was going to do some productive things, but I didn’t. And there is nothing wrong with that.
 
There is no wrong way to deal with this.
 
I again ask all of you to offer your best that you have. Love, thoughts, prayers, hope, and any good vibes. We should be at Girl Scout Camp this week and instead I’m learning how to be okay being in our house alone. The cats sleep on his side of the couch and Tessa sleeps at my feet and not on his side of the bed. We get up, we do our thing, and we just are learning to exist in a home without him. I sincerely hope that he’ll be home and snoring next to me in a few weeks, but maybe he won’t be. My brain is making a catastrophe out of this because it is my biggest fear.
 
But he smiled at me today, and he recognized me. I think that it takes all of the drama out of all of our lives when I say, “my husband smiled at me today”. Because that is the biggest win I got.
 
I think that’s the hardest part, that we don’t have the dumb fights and I can’t get irritated with him; he’s just not here for that to happen. And all of the trivial crap that we got upset about, the age old “what are we doing for dinner” doesn’t matter. Because all I got was a smile. But in this scenario, that is worth more than anything in the world. Even if it was through that weird goatee that we make fun of.
 
Thank you all for checking in on me, thank you for loving him too. He’s walking this fine line, but there are people here for me that also know when I want to be alone. I started a new painting yesterday, because it lets me exist in a place that isn’t here. I get a break from the worry.
 
I also need the space sometimes to put the worry and the catastrophe aside and be okay with where I am now. It’s all very complicated, but I am working on being in a good space, and I have the best people in my corner. My mom sat with him for probably 8hrs today just knitting and sitting with him, and he needed that too. It gave me a break from feeling like I was supposed to be somewhere so I could just be here at home.[...]

I’m pretty sure there is a school of thought that “no news is good news”. I don’t think that applies here.
 
No news means that there isn’t good news, that we aren’t moving in any direction other that where we are at this standstill. No news means he’s at a higher risk of infection. No news means he isn’t progressing. No news means that there isn’t the recovery that we were hoping for.
His labs are still decent, and the dialysis is still doing the work his kidneys should be doing. But he isn’t getting better. But, to be fair, he isn’t getting worse.
 
For everyone that has visited him, thank you so much. For everyone that is planning to, please please let me know. When I checked in tonight on my “before sleep call” they said he is getting a little agitated with so much stimulation, he is still slightly conscious and can get overwhelmed. The people that visited at the end of the day were asked not to speak too much to him because he was overwhelmed with the whole day. I know it seems like an annoyance to be texting me, but I don’t want him to go through too much right now. He is still responding to the stimulation so he’s still aware, but in the state he’s in it can get to be a lot.
 
I want everyone to see him, because we don’t know how long he will be with us, but maybe we need to space it out?
 
They would like to extubate him in the next day or two, but that will depend on how he’s doing on the IV meds and the dialysis. His main doctors aren’t in again until Monday, the weekends are really just a waiting game. Yes, he has critical care doctors checking in regularly, but his heart failure team and nephrology aren’t really in on the weekends.
 
So, we wait. There is no good news, no bad news. Just… the same. They added an anxiety drug today because he was so agitated and they added an antibiotic just to be safe. They intubated him again yesterday because they were concerned about his breathing and wanted to do the safest thing for him and not let it go to chance. We’re letting his body heal and hoping for the best.
 
I love you all, thank you for all the support. Today my dad cut the grass at our house that Cory was planning to do this last week, he just got the new battery in for the weed wacker, and we did finally buy that push mower he’d been eyeing for a minute. He only used it once. I look around the house at all of his things, his plans, and his projects. I found the notebook that he had his ideas in that he wanted to put into his own cookbook. I made a stack of his notes and moved his computer along with his inventory and order sheets to his desk where he usually keeps it. I did all of the things that people do when they still expect them to come home. I put things where he could find them, his fitbit charger is right where he left it. I put the cookbooks back on the shelf by his side of the couch that he was reading. I make the bed with his blankets where he likes them on his side of the bed. I refilled the water pitcher in the fridge because he likes his water really cold.
 
I should probably water his plants…
 
Everyone keeps telling me to take care of myself, and I appreciate the gentle reminders. I have my family, I have my friends. Just checking in on me is really helpful. I’ve been through this before, the days alone where Tess gets to sleep in the bed. But this time it feels more permanent.
 
I’ve been reading that some of you are pumping up the hot jams and thinking of him, some of you are praying. Some of you have us in your thoughts, and some of you are sending love. Some of you are doing all of the above, and we will take whatever we can get. Please keep doing whatever you are doing, and if you need his current hot jams list, let me know. He was perfecting an all female empowerment playlist on my Spotify called “hotfuckingpumpupjams!!!” (sorry for the swears mom) that was going pretty well. Or you can have my pandora “90’s country” for Country Music Monday.
 
All the love,
Sarah[...]

I think that we all go into this thinking that we’re invincible. We think that even though we are told the repercussions, we deny them. We think that it doesn’t apply to us, and that we will somehow make through regardless of what they tell us to do to stay alive. We think, “this day doesn’t change all of the other days, I just messed up today and I give myself the allowance to have a day where I don’t care”. To you and me, that means nothing. To Cory, it meant quite a lot.
 
Cory takes six potassium pills every day. They’re about the size of a small Lego, and they cannot be crushed at all; they must be swallowed whole. I used to ask, “did you take all you potassiums?” and the answer was continually “yes” so I stopped asking. He knew he had to take them, so I stopped being obsessed with the pills.
 
I should have asked more.
 
In September, you all remember the ventricular tachycardia storm that took him into a scary place. His potassium was at 2 when he was admitted. He had all the signs, he was lethargic and nauseous, he was distant and irritated. This time I didn’t see any signs, he was working hard and doing fine. He even ran the brunch line in the morning after doing hotel breakfast. He got a little heat sick, but was fine. We got done with work, we went home. I was working on Girl Scout stuff (camp is next week) and he was inputting the order for work. We were just sitting on our couch, with the TV on the background while we got done what needed to be done. I went to let the big girls out (that’s how we refer to our dogs) and I came back in. He looked at me in a panic and said, “how long were you gone?!” It had been about a minute and a half.
 
Cory told me that he just had dozed off, the 7am start time is no fun for either of us. So I got back to work and so did he. But then it happened again.
 
Its like a seizure, his eyes rolled back in his head, he had a Gatorade in his hand that went flying, and he stopped in a panic a few seconds later saying he didn’t know what was going on. His defibrillator went off, that was the second time. It went off another fifteen times that night in the ER. It was another ventricular tachycardia storm. It was that thing that sends nightmares through my life and causes me to wake up constantly to make sure he’s still alive. That thing in September that scared me more than anything in my life was happening again. The images from September that scare me when I look at him were all coming back, but it wasn’t a dream or a nightmare. It was really happening again.
 
I am grateful for the ER doctors and nurses and Mount Sinai, they not only remembered Cory and I, but they didn’t even send us to the waiting room. They also had new protocols in place because of what happened in September. So instead of feeling the like stupid kids that don’t know what they’re talking about, they had us set up in a room with doctors who knew his case almost immediately. And for the record, if you’re following the story, they have magnets stationed through out the ER for anyone that comes in with a defibrillation situation, and at the very least that’s progress.
 
They triaged him, they got him in, they called every shot in a really great way. I was still standing outside the room holding his things and crying, thinking this would really be the end again. Watching your person go through that much pain again and again with nothing they could do is about as hard as anything. Watching it happen again is just indescribable. His potassium was at 2.2, and he was crashing.
 
They put in a central line to his vena cava, they gave him direct drugs to his heart. They watching his heart get weird and knew it would go off again before it did. Cory, even did a classic Cory thing, and said “uh oh” right before it went off every time. It would have been cute if it wasn’t so heartbreaking.
 
Cory was transferred to St. Luke’s that night, where he is still currently recovering.
 
In the morning, I went there and he was okay, he was talking and joking and making fun of TV show with me. It was like most other hospital visits. I left after a few hours, I had girl scout prep stuff to do, and had our animals to be with.
 
I went in on Tuesday. He was really lethargic and on a few new drugs that were just knocking him out. He was basically asleep the whole day and his labs were fine, so I left early to work on more things at home.
 
I got a call at midnight. He was crashing. I was asked to come in right away just in case. I was there until around 3am. He was brachy cardic, his heart rate was at about 45 and his pacemaker wouldn’t kick in until he was at 40. They brought him back but it was a scary situation that they wanted me to be there for. I got home around 3am and was asleep until 3:45 when they called me again. He was crashing. They were performing CPR when they called. By the time I got there, he was intubated and sedated.
 
From the sounds of things, they were trying to up his potassium and it just wasn’t sticking with the addition of the diuretics, so they were giving him potassium nonstop. But his kidney’s weren’t filtering what they needed to and his potassium got to 6.8, which is incredibly dangerous. His defibrillator went off again, he was needing to be ventilated. He was not doing well at all.
 
I went home at around 5am and went back at 12ish/1ish. The heart failure doctor and the critical care doctor were ready to meet with me in minutes of my arrival.
 
I also think there are moments you have in your life that you will never forget, that you think aren’t real. You’re dreaming, this isn’t happening to you. Your whole life can’t possibly be everything you’ve feared just like that.
 
They told me that he most likely wasn’t going to make it out of the hospital, and that it was time to call anyone who would want to see him before it was too late. If anyone I knew wanted to say goodbye, it was time to make those calls. There was a chance, but it wasn’t a good one. Bring in the loved ones. I’m so sorry for the news. Make those calls.
 
I was in shock since then until and will probably stay in shock until sometime next year. I can’t wrap my brain around it. I was just about to lose my best friend, my person.  This was really happening.
 
I signed the papers to start dialysis, his kidneys were giving up. They gave me a bag that had his wedding ring in it, so it wouldn’t get lost. I went home and started making calls. I looked around at this home we built and thought about how I would ever be here without him. I think that Wednesday, June 8th will go down in history as the hardest day of my life so far. I was actually going to lose him. There is not a string of words in the world that can describe the pain of knowing you’ve lost everything you held close to your heart, and I wouldn’t’ wish that on anyone in the world.
 
My sisters went to visit, along with a couple other close relatives. It sounds like they said the same thing I did. “You’re too strong, don’t do this to any of us”. I believe one of my sisters even told him that he can’t do this to them or to me. I told him he was a stubborn asshole and he better keep it up and stay alive. I would have said anything to make him believe in what he could do.
 
I called them later that night, and through the deep sadness I heard the words, “the dialysis is working”.
 
His potassium was down to 4.4, by morning it was at 4. He was intubated, groggy, confused, and obviously upset. He was only awake every few minutes today.
 
At around 8pm on… Thursday? They extubated him. It was like a miracle. His labs were coming back great and the dialysis was working. I was so happy all day, he was making huge improvements. One of the doctors that told me he wouldn’t make it told him everything was looking really good.
 
I went in today, Friday, ready to just hang out and hopefully talk to him. But he had labored breathing and wasn’t really waking up. When he did, he was not making much sense and then just fell back asleep.
 
I felt like it would just be a recovery day until I met with palliative care and the critical care doctor. He can’t live like this, dialysis can’t keep him alive, we can’t get him off of the IV medications. He wasn’t really waking up. We talked about extreme measures and end of life care. Even though it felt like we were doing well, there was still so far to go. And he may not make it. 
 
They told me that this is a rollercoaster, and all I can do is take care of myself and go with it as it comes. We were in a good place, then a bad place, a good place again, and now we’re in a holding pattern.
 
I hate seeing him like this, but I know he’s a fighter. And I still have hope.
 
They intubated him again tonight, and he will be getting a feeding tube soon.
 
 If anyone would like to visit him, he is at St. Luke's Aurora, and you will just need to know that his name is Cory J. Wilson. They will direct you where to go. He can only have two people in the room at a time, but anyone can see him. The hours are from 10am-8pm. If you would like to know a good time to see him, you can text me at 262-510-3370. I am there usually from noon until who knows. I go home early some days and stay late on others. If there are a lot of people that want to see him at a certain time, there's a nice waiting room to chill in. [...]