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.[...]

September 19th, 2021
 
I haven’t written anything in here in a long time, and if you’re still following this, thank you.
 
One of the reasons I haven’t written in a long time is because I haven’t exactly needed to, the updates were few and far between and the major things never felt as major as being in the hospital, especially because they were all preventative measures towards living with heart failure.
 
So, I guess that means we’re due for a pretty long update, and for those of you willing to read the whole thing, thank you again.
 
In late June we met with the heart surgeon a few times, who (after a few quick meetings) said that Cory was going to need surgery to have a permanent defibrillator put in. I guess every defibrillator is a pacemaker but not every pacemaker is a defibrillator? Or it’s the other way around, I’m still working on this medical degree here. Cory was understandably upset, surgery is a big deal, but we had to move forward to get the life vest off and to move towards a normal life. By normal, I mean swimming and kayaking and not having a car battery attached to him (thanks to Sean for coining it that).
 
On July 12th we arrived at St. Luke’s for the surgery. It was fairly quick and went very well and we got to go home that day. The thing about this surgery (if you’re considering it) is that they say in the doctor’s office that it will be two weeks recovery, but what they mean to tell you is that it will be six weeks. After surgery they said four weeks and at the check up they said two more weeks, which was frustrating because we thought he would be up and running sooner, but it’s fine. What isn’t fine is that when you have surgery and can’t be yourself, it takes a lot out of you. As some of you may have read in my previous Facebook posts, we didn’t handle it as gracefully as I would have preferred, but nothing is every exactly what you wanted it to be (see; Heart Failure at 36) and we survived the recovery together. By the way, the six weeks was really more like eight weeks and even still its sore for him and frustrating because he has this huge lump on his chest.
 
Cory’s medications are not set in stone. It’s been a rollercoaster of “up this” and “stop that” and “take more of this” and “maybe not that”. But that’s how all that stuff works, its finding the right balance of medications to keep his levels where they need to be. However, when you up diuretics enough you’re also lowering blood pressure with all those blood pressure medications, and about three days before Irish Fest, Cory got up to use the bathroom at 3am and fainted. They think he just got up too quickly and his pressure just dropped. Anyways, he fractured his foot in two places. I mentioned Irish Fest because Cory was so looking forward to helping out and being a badass cook again during that weekend. He had been doing his weightlifting at home (one pound weights, he was very weak after not using his arm for so long) and it was really hard for him to be at home with a broken foot.
 
Cory saw a specialist that said he only needed a foot boot and not a whole leg boot, so we got him one and he was back in action… sort of. So, Cory was sick and tired of being sick and tired, so he asked me to play catch with him (in a light no walking kind of way) and HE DIDN’T CATCH THE BALL. But yea, it hit him in the face, and he got a black eye. The swelling wasn’t bad but couple that with a broken foot and he didn’t look great. But his attitude was awesome, and he really worked hard to stay positive.
 
Cory takes potassium every day, they’re giant horse pills and they’re tough to swallow. When you have a heart condition, its apparently very important to have enough potassium. Sodium, potassium, and the electricity of the heart are all very intertwined. That is about as much as I learned about the science of that (thank you Audrey for the lesson). Cory’s inability to stomach the potassium (he missed a couple doses, he takes three potassiums daily) and the fact that he couldn’t keep them down lead to a potassium shortage in his body. He has really good days that are followed by really nauseous/ tired days and that’s the balance of regular life that we work on every week.
 
That brings us up to this weekend.
 
On Thursday he only kept one potassium down. On Friday he felt weak and sick all afternoon during his prep shift. He asked me to drive him home, so I did. At 5pm when I was training hosting, he called. He felt awful, worse again. I will say for the official record, that when we went to urgent care because of the nausea about two weeks ago, they told him it was psychological, in his head, and then they gave him some nausea meds that he had gotten a few weeks before. They told him to talk to his therapist about why it was in his head, and they sent him home. So this time, he took the nausea meds but still couldn’t keep anything down. He felt weaker than ever, and he started losing time.
 
By losing time, what I mean is that he was watching TV and missed large segments of it. He didn’t know what was happening, so he called Aurora again to ask them what to do. They said his defibrillator may have gone off, and that he should go to the ER immediately. I ran home from work to take him, by the time I had gotten home the defibrillator went off for real.
 
So sidetrack on what that means. You know how on TV in the doctor shows where they take the paddles and shock someone? And they yell CLEAR so that no one else gets shocked? And the patients whole body seizes and spazzes and they’re unconscious? That’s what Cory’s internal defibrillator does in his body when it goes off, and Cory’s description is “like a sledge hammer in the chest”.
 
We got to the ER, they did his entry stuff, we sat in the waiting room, we got to the small room where they gave him an IV and did all the vitals again. And then the defibrillator went off again.
 
It went off 13 times in the ER. 13 times his eyes rolled back, his whole body seized, he screamed in pain. 13 times it sent the shocks through his body.
 
That whole situation in the ER was kind of a blur. Rushing to another room while I held his belongings crying outside the room. I thought he was going to die. Maybe 8-10 people working on him. People running in and out trying to find the magnet that stops the device in his heart. Them getting the crash cart in case the device stopped working. Someone asked me what his weight was and I blanked, even though he weighs himself three times a day and tells me what he’s at. I blanked. Who is his doctor, where are they. They called Boston Scientific (brand of pacemaker) as soon as he arrived and someone was driving up from Oak Creek.  More blood work. Cory screaming. Them asking if he knew where he was. I tried to stay out of the way but they never asked me to leave the room. At the end they said they really didn’t think he would make it, which was what was going through my mind the whole time. What went wrong, what just happened?
 
They said 13 times was more than most people have in their whole lifetime.
 
I was told that potassium levels at 2.8 are considered incredibly dangerous, life threatening bad. He was at 1.9.
 
Putting potassium in the body is apparently impossible, any way you slice it. There are the horse pills, smaller pills that are also enormous, or there is a powder you add to water that is also nauseating, or they can put it in an IV that burns going into your skin. So they gave him three pills and put it in the IV. He felt better almost immediately, he started looking better and the defibrillations stopped.
 
St. Luke’s Aurora is the heart place, we all knew that, so they set up a transfer. I watched him get loaded into an ambulance again. To say I was emotional is the understatement of the century, watching him go off was all too familiar. “Here we go again”.
 
He got to St. Luke’s at about 10pm, got settled in, got all hooked up to all of his things again. Like it was just what he does. I got to facetime him, see him, ask him questions. He got my Discovery + password to keep binge watching Chopped. I would see him in the morning.
 
I got a call at about 8:40am. His defibrillator went off 15 times Saturday morning. 15 more times.
 
The doctor called me. They decided the best thing to do was put him under. No more pain, no more awareness of the pain. I told them yes, I understand. But I needed to talk to him. I FaceTimed him and the nurse answered, he was having another defibrillation. I got to see him for a few seconds after, and then they put him under.
 
Cory has been (mostly) unconscious since Saturday morning. They have him on (let me get my notes) Propofol (puts him out), Fertanyl (pain med), Lidocaine (also to put him out), and Esmolol (heart rhythm med). They put in another PICC line and also put in an arterial line. The nurse (yay Ian!) told me that the level of these meds he’s on should have totally knocked him out, but he’s not having it and he’s been back and forth awake. He also likes to: ask for is ipad, open it and then fall asleep, ask for his phone, open it and then fall asleep, ask for his glasses because the meds have his brain in a fog and he can’t see so he thinks his glasses will help and then they don’t and he falls asleep, ask for paper and a pen write some form of nonsense and then fall asleep, try to sit up, have the nurse adjust his bed so he isn’t leaning and then fall asleep.
 
I told him that if he doesn’t rest he’ll have the tubes in longer, but he keeps forgetting for some reason…
 
He is intubated. There is a tube breathing for him. He has a tube that takes out bile from his stomach. He has four IVs in his arms and the PICC line and the arterial line and all of the other tubes and lines keeping him okay. He’s pissed he can’t talk. He’s mad cause they brush his teeth or something to avoid pneumonia, he hates that he can’t get up. He’s mostly pissed that we don’t understand his hand gestures and that his (already) atrocious handwriting is illegible.
 
But he is okay. Ian said his potassium is now at about 4, his blood pressure and heart rate are good. He’s doing well. They plan to extubate tomorrow morning, let him breathe on his own, and hopefully feed him something. Ian isn’t working tomorrow and I thanked him for everything and then he said “Oh no, I’ll see you Tuesday!” so I think we’re maybe in this for the long haul.
 
The intubation and putting him under it to let his heart REST. Let his body rest. Apparently the adrenaline going though him every time it went off set off the clusters. The adrenaline put his body in panic and they needed to shut him down.
 
Other questions that may need answering:
Is he going to be okay?
Well. Yes and no. He still has heart failure, that didn’t change. But we are pretty sure that this was a potassium thing which we can fix with medication. His regular heart failure doctor was in this weekend (I kept missing him) but he is totally in the loop as to what is going on. I will say this, Cory is an anomaly. They’ve said it many times in the past few months. Organs happy, fluid high, sodium good, heart failure. They’re kinda stumped and it scares them (and us, duh), but we were constantly working on it. They’re worried he might crash (and he did) but not for the same reasons we thought. Transplant is the end game, but (paraphrasing) is that we’re going to kick the can down the road for as long as we can until he needs it. I don’t think this was the big crash but I don’t know yet. I don’t think they know yet. We are all taking this one day at a time and keeping him alive, its all we can do.
 
Was this COVID?
I put this one in here because there are some things unanswered for everyone over the summer. Cory’s doctors had him get a DNA test. This is genetic. He had a gene mutation that basically said “you will have heart failure sometday!”. The issue is, when was it going to happen? The gene mutation should have put it at mid-forties, but the early onset could have been COVID, but they still didn’t know. I don’t think they can know. It gave us some answers, yes but… there’s no certainty.
 
Does he have his stuffed animals?
Yes, he has a stuffed unicorn that he took kayaking last week that (the amazing) Jo Dankle gave him for his first water outing, and he has Piglet to keep him company.
 
Can I see him or visit him?
Actually, yes you can. So the visiting stuff changed a little since March. He can have AS MANY VISITORS AS HE WANTS. But only one at a time. I’m gunna be there, but text me or call me and I’ll wait in the lobby, I’ve got stuff to work on too. My cell phone number is 262-510-3370. I may not always answer, but I’ll do my best to get back to you right away. Visiting hours are from 10am-7pm, and you have to wear a mask at all times.
 
St. Luke’s Hospital is at 27th and Oklahoma. There’s a huge parking garage that I hope to one day make a map of because of it’s wackiness. Park in there somewheres, go to the elevator (not the medical offices) to the 2nd floor. They ask you if you’re vaccinated and if you have any symptoms and then give you a nifty colored wristband. Cory is currently on the 7thfloor of the Cardio Vascular ICU, room 20. Take the elevators to the 7th floor and then go to the right, there’s a phone on the wall. Pick it up and the nice person at the desk will ask you what’s up. You’re here to visit Cory Wilson, room 20 and say who you are. They will then check with the nurse that it’s all cool, and then they’ll let you in but also you’re in the matrix or something. The phone thing isn’t there when it’s a regular room, which he will be in after ICU. Again, I’ll go wait in the waiting room and do some stuff, please don’t feel like you’re kicking me out. I want him to see all of the faces that he loves, and I want you all to see his unshaven heart failure face too. He loves me and seeing me but he needs you guys too, really. Even if its just for an hour or so. Also, I have to take care of all the pets and hermit crabs and whatever else weird pets we have so I’m not there from 10am-7pm.
 
No flowers, no food. And again, you have to wear a mask at all times, even when the medical professionals aren’t in the room. I took mine off to write today and I got a talking to. If they have medical stuff to do they will ask you to step out if needed and if anything happens with him they call me right away. You can ask them questions, they’re happy to explain everything. That nice guy Ian explained the same thing to me like three times today, nurses are amazing.
 
How are you?
I’m super sad, all of the time. This is bringing all of the horror that was spring 2021. Being alone in the house, calling the nurse at 2am cause I can’t sleep. Also not sleeping. Researching medications. Memorizing stats/ terms. My house is a mess, I am a mess. I cry a lot. But I am okay. Cory is my best friend, my person. He keeps calling me his PIC (partner in crime) but that’s to bro for me. We were at a place where he was kayaking on Monday and fishing with Pat on Wednesday. We were at a place where we can’t afford a vacation but we wanted to go camping. We started making plans again. And now, we’re not. My family is amazing, my mom drove to my house from Waukesha today just to give me a hug. They check in, they call, they send cute animal pictures. My sisters have been literally here for me. I get regular texts and calls and invites to random “lets just pet this Guinea Pig” Pat has brought me food and given all the bear hugs. My coworkers have taken over the job and are crushing it, the love that place has is unprecedented. That place is a legit family. I have the best people in my life, and if I don’t respond to you it’s really not you, it’s me. Please keep texting me, you’re not bothering me AT ALL. I love to know how many people care about both of us and love both of us. My people are my world, so again, please text and call and write.
 
Do we need anything?
Well, if you have the cure for heart failure in your back pocket, now would be a great time to bust it out. But no, I mean yea I need to get dog and cat food and they don’t carry Fromm’s just anywhere but I’ll pick it up. I have been ordering food and not making food but that’s such small potatoes to everything else. By the way, potato peels allegedly have a lot of potassium. And if anyone is an animal whisperer, please tell our cats that NO, I did not get rid of their Cat Dad, and they can stop squirreling around me acting like its my fault.
 
But no, we don’t need anything. We are okay. We’re gunna coast for a minute and just be what we need to be and accept what we can handle. I’m not going to work for a minute (again, thank you Clare staff) and Cory is obviously out for a while. We’re gunna focus on getting him better and really, that is all that matters. Literally that is all that matters.
 
Could this have been avoided?
Uh yea, if he didn’t have heart failure. Also I mean if he had been up and up on the potassium. But he’s been feeling sick on and off for a while, and maybe this will help get him in a better rhythm to take care of himself better. He has like 4 water bottles to measure his fluid intake and he has alarms set for all his meds, but if he’s sick he’s in the right place, so maybe they can solve the nausea that comes with potassium.
 
Okay, but if I see him, what do we talk about?
Probably not heart failure. He is legit sick of all the medical talk and he wants to hear from his friends. Don’t ever feel like your life isn’t important because over the last few months (especially after surgery) he wants to hear about you. And he wants to be happy for you. Make fun time plans, talk about going fishing even if it never happens. Just be you, he misses you.
 
Anything else?
Yea, hug your people. Tell them you love them. Seriously and please. What do you do when you think it may be the last time you hugged the love of your life? Or even just saw their eyes open? Or when you are intubated and can’t talk? I will see him tomorrow, I hope. But nothing is guaranteed. Make sure you let the people you love know how you feel.[...]