When two people decide to get married, they assume that things will continue on as they were forever. While I have no doubt that we both thought that “this will be fine” we didn’t think about what could possibly be thrown at us in the last two years. I will say this though, if I ever doubted our connection before, I never will again. Through Hell and high water, we are there for each other (not without its faults of course, marriage is a tough).
 
As many of you know, Cory “died” twice last June. Like, actually died and his heart stopped and his organs were starting to fail. Those of you that could make it out to see him saw that deadpan sadness in the nurses’ eyes; they’d seen this before. Those of you that saw me saw that hopeless wreck that had given up on everything and didn’t know what day it was let alone what I was supposed to do for our family (it’s all pets, btw).
 
There has been some serious Hell and high water this last two years (almost to the day, February 25th, 2021). The day they gave the diagnosis and I was sleeping in the hospital room, the night they handed me his ring, the day I gave it back. The MANY times he walked out of St. Luke’s. The surgery, the life vest, the panic, the hopeless and the hopeful. The things in this blog do not even come close to covering the anxiety I’ve had, the sleepless nights, the pouring over bills, the constant worry of how we are going to live our lives. It doesn’t explain the yogurt shots I brought to him so that he could keep down his meds, the panic I felt when I saw his name pop up on my phone , the phone calls I’ve made, the advance directive he signed. My worst fears looking me right in the face just a couple years after we got married. I wake up several times every night just to make sure he is still breathing. Some of you have seen it first hand how bad it got; for him, for me, for us both.
 
But, my anxiety needs to find a new home. His heart is healing.
 
When Cory was in the hospital last June, I asked when he would get another Echo. There was no point, they told us; his heart would not heal. Both sides of his heart were now failing and even an LVAD couldn’t help him. He had an appointment in December and they made plans to start the transplant process again. As you may remember, there are like 10,000 tests he needs to pass to get on that list (it’s like 16). But to start, they scheduled an echo and a stress test this last week.
 
His ejection fraction went from 17% to 40%. He is not even close to making any list. (For all you non-medical folks a regular ejection fraction, or the amount of blood your heart pushes out, is about 50-75%). His heart his healing. It’s getting stronger. They told us it wasn’t possible. I say this again because when he was on dialysis and in a coma I was told he was never going to make it out of the hospital (this is when I called you all to come say goodbye). And not only is he without dialysis and very much alive, but he is actually healing.
 
Cory has been joking with me since December that his New Year’s Resolution was to not have Heart Failure anymore. A stupid joke that I dismissed several times on Wednesday. But then he called me, “I kinda don’t have heart failure anymore”. He was crying, I was crying, and then we went and got him some raw oysters.
 
I think of it as “remission” more than anything, because he still does have heart failure and that will not change, but we really don’t have to worry about it for a long time. My anxiety needs to find a new home (I say it again because we are both in a weird space).
 
This life has thrown some weird things at us in the last two years. For those of you not on my Facebook, we lost our dog in December. Fen was an amazing girl, but her seizure disorder got the best of her after all at 11 years old. We adopted a rescue Border Collie in January (we’re a two dog kind of house) and Hati (like Hattie) has been testing my limits for weeks now (my limits, not Cory’s, she loves him and does everything he says). But, after everything that happens, good and bad, we soldier on.
 
Cory has an appointment in a few months, they are talking about lowering his medications (seriously!!) . He has another Echo in 6 months, and we will see how things are going.
 
I want to thank everyone following this for all the support; emotionally, financially, medically, and everything else. Even if you just watched me melt down in my house.
 
I know that I could not have done this without you all.
 
I really love having good news instead of bad news. <3[...]

I definitely have a lot of mixed emotions, thoughts, and feelings. But, to be fair, we all do. It’s just the situation and the timing that changes for each of us based on what is put in front of us at any given time. Sometimes when they're out of pita bread* at the store and I have to go somewhere else it feels like the world is ending.
 
When I open my computer there is always a photo of Cory as my background/ lock screen. They cycle though all the photos that my computer recognizes as his face, that’s just what I wanted when I took on my current job. I wanted that to be what I saw to remind me of what I have and who I work for. Most of the time, it gives me great joy, and I smile at the photo and the memory that’s attached. Other times, like today, my stomach just drops and I am suddenly just sad and nostalgic.
 
Cory was admitted into the hospital again today. Again. Yes. Again. Again and again. It’s like that episode of Buffy where they can’t leave the house and they just live there infinitely until they find the solution.
 
Cory left the hospital exactly three weeks ago today. He got discharged, he came home. But his arm was sore, because he got a pneumonia shot and that was that. But then it was still sore, and then it was his neck, and then his side. And that was fine, he was probably just sleeping weird and the coughing was from the tube down his throat so long. They even did that awful test last week where they put the camera down your nose and they just said, “yea, your throat is still swollen”. So that was that. Except it wasn’t, because it’s never just nothing.
 
The pain in his shoulder got worse and worse, and over the weekend he got a fever that topped at 101.7. But that’s not too bad, and the on-call doctor was really reassuring when he told me that Cory could or couldn’t go to the ER, that he couldn’t tell really and just, “I don’t know”. But Cory’s fever got lower over Saturday night and by Sunday night it was around 100, and by Monday it was down to 99. So, maybe just a little bug that he was having a hard time recovering from. Sure, fine.
 
But then, last night he couldn’t sleep. The cough was so bad, and the pain was too bad. He called and made an appointment to see a doctor that was part of his primary care physician group. Okay, cool. Friday, we’ll talk to them then. They called back about 10 minutes later. Because of his recent stay and to be totally safe, we should go to the ER.
 
I met with my therapist anyways, because I had the appointment, and I was planning on it just being short. She told me that instead of catastrophizing the situation, I should be hopeful and not assume the worst would happen even though my brain is thinking that it will because history has shown me that it has. So, in the ER, Cory and I talked about dinner for tonight and plans for tomorrow. I mean, we were there from 3:23pm until 11:30pm when I left, we had time to kill!
 
I thought this would be the time that showed me that good can still happen and the worst won’t always happen, but it didn’t this time. Again. But I can’t let it dictate my life. I’m working on all of this, TBD on how that’s going.[...]

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. [...]

I apologize for the non-update. It’s been a whirlwind couple of days and now that everything is sorted, I can finally summarize the last couple of days.
 
On Tuesday we met with quite a few people, all as part of the evaluation. It started at 9:30am where I had to FaceTime in since I couldn’t technically be there until 10am, it was with Ryan, one of the transplant coordinators that went through what had to happen for Cory to get on the list. Cory has to go through the same evaluation to get on the heart transplant list that he had to go through in the spring to get on the LVAD (left ventricular heart device) list. Since this is a separate list and since it had been over six months since he had the evaluations (by 10 days…) he has to do the evaluations again. In the last two days, Cory and I have met with the dietician, the surgeon, the surgeon’s assistant, the social worker, the psychologist, the pharmacist, palliative care, and another psychologist, from the hospital that talked about trauma from the defibrillations.
 
They also did labs, which looked like about 30 vials of blood that they took all at once from his PICC line right before he had his CT scan. Those labs are to check all of his levels and his organ function, to see if he had any bloodclotting disorders, infectious disease tests (to see if he needed to be vaccinated again for anything), and to see if he had any rare antibodies. None of these things would make him not qualify, it just means they would alter some things regarding meds or donor heart types before a transplant. He also had a bone density scan and a right heart catheterization (the swan catheter that he had in his neck for a few days last time). I think they did the body screen as well.
 
By this point, Cory hadn’t had any arrythmias AT ALL. He is off of the water pills (that drain potassium) but still on some potassium supplements. They added a beta blocker and a medication for arrythmias. They’re going to add back medications as necessary, but because he’s not on a water pill he needs to be crazy careful of his weight and his fluid consumption.
 
Yesterday were a couple of those tests in the morning, and then we waited and met with a couple more of those people and then waited until the end of time before Cory got discharged. We got home about 9pm and slept pretty dang hard.
 
So what now?
So, they’re trying to get Cory onto the transplant list because that gives him time on the list. If he gets on it now then if anything bad happens again he’s already on the list and just gets moved up. It also accumulates time on the list which also gives him a better chance. The way the doctor put it, you can’t win the game if you don’t play, so being on the list is good. He may not get on this time, which unfortunately means we just have to wait until something bad happens again to be reconsidered, but the tests are good for a year so he would just be re-evaluated then.
 
What will heart transplant mean?
I think that my last post about perspective kind of hit on this, and in the last couple days some things were said and explained that made it make more sense. If/when Cory gets a transplant he will no longer have heart failure, but (as Palliative Care explained it) you’re trading one disease for another. In order to keep his body from realizing and attacking the new heart, he will have to be on a lot of immune suppressant drugs for the rest of his life, meaning there are a lot of things he cannot do or eat anymore. He would become the definition of immunocompromised, meaning that everything he does and eats should have considerations of whether it would make him sick because his immune system will not be able to do anything and we would be back at the hospital. It means no more eggs cooked anything other than hard/ scrambled, no meat cooked under well done, no raw seafood (this includes oysters and sushi), no gardening without a mask and gloves, no cleaning cat boxes, or salamander tanks. If there is cheese in the fridge with a little mold on it, the whole thing must be tossed, unfortunately that also that means no bleu cheese. Nothing past an expiration date. Anything questionable is a no. His body won’t be able to fight things off. He’ll have to wear a mask in big public areas. And he’s also at risk for cancer, especially skin cancer, so he’ll have check ups every six months to check for spots or moles on his skin. You trade one disease for another. And you all know how Cory is about food, so it’s a big hit, but that means a lot of Oysters until we get that call.
 
He also needs to have someone with him 24/7 for about 8 weeks after transplant, and it doesn’t have to be just me. He will be walking out of the hospital, so it’s more to just make sure someone is there in case he suddenly doesn’t feel well or gets dizzy and needs help. This might be a long time from now, but I’ll be calling on y’all the day we get on that list. When that day comes we will have go bags packed and be ready at any time for the call.
 
What happens now that he’s home?
WE REST. I’m still very tired. Also, we clean the house. And the fridge, maybe buy some groceries and make a meal plan (I wasn’t kidding about not cooking food here, thanks again Blake for the food). Also, we internalize the last five days. Cory is tired and weak, but not too bad. He sorted his new medications already and we just figure out how to get back to our lives for now. There are many appointments scheduled now so I also need to organize my planner. But he’s home and resting, and I hope we can both get back to normal very soon.
 
A few people wanted to visit Cory in the hospital but with all the coming and going it just didn’t work out. He’s here now though, and if anyone wants to see him that can hit him up. I’m probably going to back to work before him so it would be best to coordinate with him now.
 
Cory has been in a great mood since he’s been home, he’s goofing around and being silly, which sure is nice. Every time he says something snotty and sarcastic I just look at him he asks me if I want to return him to the hospital. The pets are all happy to see him and they all seem more at ease now that we’re finally both here and I’m not stressed out.
 
The dietician was thrilled with the work we have done to keep sodium out of our lives and to cook food at home. Talking about which stores have the lowest sodium vegetable broth and canned tomatoes just blew her mind when she asked how we were at reading labels. I almost wanted to call you all in as witnesses for how much I talk about sodium. And having the gym in the basement with the treadmill, and the activities he does/ hobbies he has just blew the mind of the second psychologist. I know they’re used to dealing with older people, but being able to show how adaptable we were the first time showed them that we can handle whatever restrictions are thrown at us. We just need to get back into some routines we got a little relaxed on (meal planning and fluid intake) and we’re going to be in good shape.
 
Okay, but what about the scams?
Cory had a couple more good ones in the last couple days. One was to give me his macaroni and cheese in exchange for me going to the cafeteria for tartar sauce. Another was to ask the nurse for a popsicle and then ask the nurse assistant for one as though he didn’t just have one. He also saved all his late night snack items and brought them home in his suitcase and the orange juice exploded on a bunch of stuff, so that was a fail.
 
Did I tell you about the label maker?
When Cory wasn’t feeling well on Friday, he packed his chrome bag with things he may need in case he was admitted. When I got home he said he had what he needed so we could leave right away. We left everything in the car at the ER and when things started to get weird he asked me for his Piglet. I went to the car and opened his bag of “important things in case I’m admitted”. He forgot his Piglet but had his label maker that Lefty gave him packed as well as the big knife Greg gave him for Christmas”. Why was his label maker packed? Some of you know the importance of the label maker, and the story behind it*, but seriously? Anyways, when I brought the suitcase I also brought the label maker, because, as I told him, I knew how important it was to him.
 
*Years ago, the kitchen staff found out there was a label maker behind the front desk and they were all insistent on knowing where it was, so I instructed every front desk staff to never tell a kitchen person where it was, no matter their reasons or tactics. They tried really hard, but as far as I know no one let them know. Then Lefty bought Cory his own label maker that also prints crocodiles and trains around the words. It didn’t end as bad as I thought but man, it was a couple years around the label maker scam.
 
We love you all so much for everything you have done and offered, and for all the reaching out and love. We know the best people and we appreciate everything more than we could ever say. Thank you.[...]

I think that perspective is really important. I’ve had a lot of different perspective shifts today, and I sure am tired. There are good and bad things to all of this, and even though today was an emotional rollercoaster, it was (all things considered) a good day.
 
They woke Cory up this morning, I got a FaceTime call from him around 8am. When my phone went off and I saw his name and photo I jolted up faster than I ever have before. He was awake but we had some connection issues, so we played some phone tag before I finally called the CVICU and talked to the nurse. But he was awake. The tubes came out fine and they were weaning him off of his arrythmia medications through IV and moving them to oral medications. And he was doing really well.
 
But he wasn’t making much sense. So, according to Ian, the amount of drugs they had him on to keep him out should have really kept him out. Totally unconscious. But he wasn’t, he fought the medications and tried to stay awake to talk to me. He kept using his hand to ask for a pen and paper but Ian kept saying no, that he needed to rest, and that he wouldn’t be able to write anything anyways.
 
Cory was relentless and eventually got that pen and paper and wrote a lot of really great stuff. “I’m just stubborn, you knew that” was his response when I told him this today.
 
Anyways, he’s awake, alert. His vision is fine. He’s mostly off of the IV meds and is on the oral meds as of tonight. He can’t walk very well and is really wobbly, and still has the quite a few wires in him.
 
Jessica, one of my favorite members of the heart failure team, had come by in the morning. When I arrived she was paged again to come back and we saw her a few hours later.
 
According to her, there is nothing that Cory did wrong to have this happen. Something like this was just an indication that his heart is failing and that it is officially time. We are going to try to get on the transplant list.
 
How this works:
The committee (or something) meets every Thursday to decide candidates for things like the LVAD and heart transplant. They are doing tests to update his information (an echo and the swan catheter neck horrible thing again) so they have the information to submit to the team. They’re going to take everything they have from the last few months to prove that he should be on the list, that what they’re doing worked kinda but obviously not really. That he ultimately needs a new heart.
 
He is going to go on the list at level 6, which means that he’s not as fine as a level 7 but he’s not living on machines in the hospital like a 1 or a 2. If the defibrillator goes off again while we wait then he may be moved up the list.
 
He has a rarer blood type, which means there is a smaller pool of people that would be in line to get a specific heart with that blood type. It is a good thing, but it also means one may be harder to come available. There is no time frame from this, it’s just waiting.
 
If we leave town more than four hours away, we have to tell them. If we get that call, we are going to drop literally everything and get to the hospital. It’s imperative that we get there because of organizing transplant teams for all organs and for OR time that cannot be moved. Jessica (again, love her) told us to live our lives. Go camping. Travel. But if we get that call, pack your stuff and get to the hospital. And if we go far away, just tell them.
 
We also have some “classes” or “lectures” or something if he gets on the list. We will learn the rules and regulations and know what needs to be done before and after surgery. This does apparently include no more tattoos. They pose an infection risk that he can’t have after surgery, which unfortunately means we will be planning some tattoo appointments in the very near future. No, we can’t afford a vacation, but he did have tattoo plans for years that literally cannot happen later on. So, we will figure it out. I assume there will be many rules like this that I haven’t ever thought of, so I will move my education from Heart Failure to Heart Transplant. I am ready to take my notes.
 
Recovery looks kinda like this, minimum 9 days at the hospital followed by weekly appointments for four weeks. Recovery is 8-12 weeks including no driving. He will have many follow up appointments after that. And he will have medications he must take every day for the rest of his life.
 
But he will no longer have heart failure.
 
Okay, but when can he come home?
Jessica said he should be home by the end of the week. He doesn’t need to be there for the Thursday decision, we just need these tests done. But first, we need the insurance to approve that he needs them. Since he got the echo today, I think we are good to move ahead to the right ventricular something with the swan catheter in his neck, and they preemptively scheduled that for a day that might be Wednesday. So, he may be home as early as Wednesday and as late as Friday? Saturday?
 
He shouldn’t be restricted too much from what he was already doing, but he’s still sore from the 28 defibrillations so its going to be easy going for a while. Again, the medications will be updated to reflect the arrythmia stuff, but that will keep him okay while we wait for the call. Once he is out of the hospital, I will encourage visitors to our house. I will be returning to work as soon as I can but with potentially limited hours depending on how much help he needs at home.
 
In theory he can return to physical therapy, but REMINDER: His foot is still broken. He has the follow up X-ray next week to see how it’s healing and with everything going on, I hope that is an appointment we can keep.
 
So, what now?
Oh, I don’t know. Cory is in the hospital and was able to watch the Packer game tonight and I received a few texts that kind of looked like this “PACKERS!!!!!!!!!” So he was happy to see the game. I can FaceTime him again and text him all the things you guys are saying, it’s really great. I feel relieved and relaxed and like there is a plan going forward, even if I don’t love it. And if I don’t feel okay, I can talk to him again. He’s been very accepting of this next step, which is really good. Which is why I mentioned perspective when I started this.
 
Cory knew this surgery would happen one day. I did too, but I thought we had more time, more time in between surgeries. Many people have said, “well this is really good news”. Which, it is. If they think he should be on that list then he should be. But the aftermath of the last surgery was tough, and this is a way bigger deal. And we would both be out of work for a while (by the way, we do still need to work). And trying to coordinate everything in our home for us to just up and disappear will be tough. I know we can do it, but not knowing when that call will come is kind of anxiety inducing. Not knowing how he will be when we’re a month out or two months out is also tough. But, as stated in my last post, none of this was planned. And we’ve gotten through this much, we can do it.
 
What am I missing?
Okay, Cory is working on his scams again. He’s going to be mad that I’m writing this but I’m pretty sure it’ll be okay. Back story: he can order an entrée and like three sides and two beverages and one dessert. So he picks and chooses all of these things well in advance. He makes notes on his paper menu about what he wants and things he had before. Anyways, his last scam was to order extra granola and muffins to eat in the late hours of the night when he’s hungry again since the last food order goes in at 6:30pm. He just squirreled them away for his late night snacks. He’s added in TWO MORE SCAMS for this time… The first one is to get two lemonades and one lemon Italian ice and then ask for some ice and then mix them all together for a late night lemon slushy. The second scam is to skip a side for his dinner order and/ or to ask REALLY nicely for a second dessert. They have a new dessert on the menu, it’s a Luigi’s Orange Sherbert that he’s super excited about. Yes, I tried it and it was really good, but you can only order them online in like a 96 case and he’s already mentioned a chest freezer in our basement more times than I would like. He actually whispered his scams to me like people were listening, so he’s taking this pretty seriously. He has the menu that he writes on and plans out his scams for every meal. I’m sure he’s working on that more as I write this.
 
He’s still Cory, just in hospital form. And he’s still a goofball. And he is still watching fluids and sodium, so it’s okay. And he’s in good hands.
 
Some of you have reached out to visit him and that’s so great! Keep letting me know. He has one more procedure but we don’t exactly know when that is, so please let me know when you’re thinking so I can make sure it’s not overlapping another person or an appointment. And if a doctor wants to meet with him I will have to ask you to wait so we can listen and then I’ll wait in the lobby. I really appreciate your patience on this. Besides that we just sit and watch Chopped and just talk and chill, and that can wait if anyone wants to see him. Also, you can FaceTime or Facebook video him or just call. He’d be happy to see your face any which way.
 
Thank you all for the love and support. This is far from over; it feels like a new beginning that includes all of the work that went in last spring. Which is okay. I mean, it’s been a very emotional day but it’s still okay. I know that we won’t always be positive and everything but if I have to go through all of this, I am so happy and proud to go through this with Cory.[...]