Friday, June 17th

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