Kirk and I have never run out of things to talk about. There has always been something to say. If it wasn't the kids, it was work. If it wasn't work, it was family. If it wasn't family, it was something else. You get the idea. These days we find ourselves talking about Kirk in the hospital. We talk about it all the time. We talk about it so much, we don't realize we are talking about it. Isadora got a new doll and I asked her what it's name was. Liver. She named it Liver. Guess they do hear what we are saying.
I was at a golf outing (driving the cart, not golfing) and there just happened to be two guys Kirk went to high school with there. Totally random for sure, but I could tell how concerned they were and had been for Kirk, for me and for our family. I am STILL, to this very day, amazed by the support and love we have received and continue to receive. I can't believe it happened, I just can't. I think it will always feel that way. I think we will always look back at this time in our lives and wonder how we survived. I also think someday we will look back at this time and be in total awe of ourselves. We will be old and in a nursing home and wonder how we did it.
We spend our nights rehashing the details. Kirk asking me if something happened or if it was one of his dreams. Me saying "do you remember when..." <insert Kirk laughing>. Kirk trying to pinpoint what went wrong. (I truly think this bothers him more than anything. He knows too much.) We talk about who we can sue. I kid, I kid. We aren't suing anybody. Still, even now, I look back and am amazed by all he went through.
I want to say we don't have anxiety before he has an appointment, but we both do. With the kidney failure, liver failure and sepsis, Kirk also had a blood clot in his portal vein (he also had two large abscesses on his liver, but that's a different story) and has been on a blood thinner since January. This week he has a CT scan in order to determine if they can discontinue the blood thinner or if the hepatologist would like him to continue with the Lovenox shots.
When Kirk came home from the hospital, he came home with a PICC line and a drain in his liver for the two 9 cm abscesses. I gave him antibiotics through his PICC line every night for a month, he would empty the drain and give himself his Lovenox shot. He was on so many medications at the time, we had to sort them out by morning, lunch, dinner and nighttime. The hepatologist took him off the liver medications in May. He didn't get off antibiotics until the beginning of July. It took that long for the abscesses to be completely healed.
Monday, Kirk has an appointment with the rehab doctor he saw during his stay at U of M. It's an appointment we are both looking a little forward to. It will be nice to see a doctor who treated him when he was inpatient and helped Kirk through some really hard days, in particular the liver drain. That dang drain was so painful the whole time it was in. It will be nice for the rehab doctor to see how far he has come. Last time we saw him I'm not even sure if Kirk was walking with his walker yet.
Just saying "Henry Ford" gives me a nervous stomach. Add hepatologist onto that and I'm a hot mess. This is in part due to a terrible appointment we had there a couple weeks after Kirk was discharged from UM. But even after a good appointment where another hepatologist took him off all his liver medications and told him she was pretty sure he did not have the autoimmune disease they thought he had, I'm still freaking out. We talk ourselves through the appointment and ask each other what the worst outcome would be. We are both feeling like the worst thing to come out of this appointment would be staying on blood thinners. And, in the scheme of things, that's not too bad. Although, the last time we didn't feel so bad about being there, the doctor recommended we start the transplant process. We can never get too comfortable!
I'm not sure why I'm saying all these things. We've been doing so much talking about what happened. The hospital, the ICU, the dreams Kirk had, rehab, how sick he was and how far he has come and what the road ahead of us looks like. I hope everyone feels like they can talk to us about the whole situation. I never want anyone to feel like they're saying the wrong thing. I was out with some friends a couple months ago and someone referenced a book and how hard it would be to feel like you may never see your husband again. She looked at me and felt so bad. I never want anyone to feel that way! Ever! Please!! No one should ever feel like they can't say something around us.
We are at this weird point where people have forgotten (but not really) what happened. We get it - your life goes on. No one else sees or talks to Kirk every single day. I think that makes it harder. We can't forget. We will never forget. Sure Kirk is on track to his new normal, but he is by no means 100%. Sure he's walking. Sure we've taken a couple trips. Sure he's working a little here and there. He is not 100%, but he's getting there one day at a time.
This has made us different people from who we were a year ago. I hope this is something we never have to go through again and I hope it's something you will never have to experience in your life. Can I just say, though, I would do it again if I knew it was all going to be ok in the end. If I knew Kirk was going to be alright, I would do it again. Anyone who loves their spouse and their kids would. Those are the things you do for the people you love more than anyone on this earth.
The golf outing I went to Friday was for Make-A-Wish. So very different from the road we traveled, but it brought me back to a place I hadn't been for a long time. There were some dark, dark days. There were days I wasn't sure would ever end. I cannot forget about those days when I'm having a bad day. My day today or yesterday wasn't bad. The night I got multiple calls from the ICU doctors was a terrible night. The day the doctor told me they weren't sure if Kirk was going to live or die was a bad day.
Again, I'm not sure why I'm saying all these things other than to get them in writing. The days ahead are brighter than the days gone by. It doesn't matter how anxious we are about the appointments this week, they're happening whether we like it or not. And we've had worse days, worse nights and worse appointments.
Thank you again to everyone who has made our transition back to reality just a little bit easier. We will never be able to repay you.
