Monday, June 13th

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.

This is not over, it never was going to be and it never will be. but his progress makes today a good day. They extubated him today when that storm was coming through, and he loves him a good summer storm. Maybe it's a sign, maybe it's not. But I truly believe that he got a rainbow the other day and he got his storm today when he came back to us.

Visitors should probably still be limited, he can't handle too much right now. If he makes it through the night they will likely start physical therapy along with speech therapy tomorrow, and that will be really draining. In the past he walks with me a little but then needs rest. He honestly hasn't been out of bed for over a week now and it's really frustrating for him.  You all know how he is, he wants to be who he used to be and that place just doesn't exist anymore.

I go back and forth, I'm really sad, really hopeful, really sad, and then optimistic again. I sometimes think about how we found each other and how rare that is, and then it feels unfair that we are in this now. But its not big picture stuff these days, its day by day, minute by minute. 

Today was good, that's all that matters until tomorrow.

All of the love to all of you,
Sarah