September 20th, 2021

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.