Skip to main content

Every Four Days

"And do you feel scared, I do
But I won't stop and falter
And if we threw it all away
Things can only get better"

—Howard Jones

It seems like every four days we are suddenly in the position of having to adjust to living a slightly different version of our lives. Not radical changes (except the first day, which was a complete shock to the system) but subtle re-orientations to life.

Today we received an update from Jon's therapy team, and from their assessment, he should be ready to leave the hospital and come home on May 18, after exactly a 2-week stay in therapy, preceded by 3 days in the main neuro floor, and five days in the ICU. I think it will be great for him to be home, especially since he'll have been in the hospital for close to a month in total. Patients often will make better progress once they leave the hospital, too, because a hospital, even a really great one, is still not home, and can be an "unreal" environment over the long haul. (It's kind of like living in a casino, with lights all day long, people walking around from area to area, beeping machines, and oxygen! If only there were slot machines!)

He's made really great progress, and gets up on his own, which is somewhat alarming to the nursing staff since he seems to not realize (or not want) to wait for staff to help him. While it's a good sign of his physical abilities, it's also dangerous if he's attempting more than he can manage at the moment (impulse control, executive decision making). We'll be having a meeting with the doctors shortly to discuss post-discharge plans, and then we'll get ready for the next steps. 

And yes, there are hard things to plan for. There have been hard moments all along this process. Walkers, wheelchairs, belts, all types of assistive gear. Feeding tubes, shunts. It's hard to think of any and all things like this, but especially for someone who is not an elderly parent. Although 62 isn't exactly a spring chicken, it's nowhere near the age you expect to have an infirmity, even if it is (we hope, we believe, we make happen by sheer will into being) a temporary one.

I feel like we're through the worst of it, and every day there's progress, there's new light, and in many ways, a new us. I'm no longer afraid. We've made it this far, and like Howard Jones says, "Things can only get better."

Comments

  1. You are brave. You are strong. You have love on your side and that is powerful. You can do it. I also love Howard Jones.

    ReplyDelete

Post a Comment

Popular posts from this blog

Visit Information

Hello Friends and Family, First of all, thank you thank you thank you for all your words of support, your prayers, gifts of good thoughts, positivity, and well wishes. It all helps, believe me! We are truly grateful and feel blessed to have the absolute best network of wonderful human beings--HUGS! I'm using this blog to update folks on, well, pretty much everything that comes across my mind, so feel free to check in if you're wondering what's going on. I write things down because I'm making lists, lists, lists constantly, and also because writing helps me figure out whether I'm coming of going from one minute to the next. I'm processing things through language. My heart is cracked wide open and everything is spilling out through my words, as Jon is working really hard to find his again. So some logistical things first. Just want to tell you what to expect if you are up to a visit to the ICU to see Jon, so you don't run into any surprises. He is in K...

Home Again

Today is the big day--Jon's first day back home! It's hard to believe it after three weeks in the hospital. I've got to say the last week has been a rollercoaster of emotions. Last Friday, his medical/therapy team gave us their update on what their recommendations are for his discharge, and some of it was hard to hear. They recommended 24/7 care; because of his cognitive and memory issues. If he were home alone and there was a fire, there was no certainty that he would be able to call 911, or realize he should leave the house. At that point, there were also some substantial coordination issues and assistive devices needed during his daily routine (a wheelchair and walker). It was a very, very difficult day. Saturday I made the choice that whatever was ahead, we would make it work. I would be happy for every moment we have. I married the sweetest most loving person on Earth, and that had not changed one bit. If you had told me two months ago that I would take my husband...

Things I'm thinking about

1. Jon's blood pressure, the EVD and his cranial pressure, and his feeding tube (when he can come off it.) especially the feeding tube. That totally blows having it in, since he has chewing and swallowing down just fine. 2. Corey's AP Chem test on Monday. He seems pretty cool and confident about it, and seriously seems to have his act together on several fronts. I would be a hot mess in his shoes, but he's brighter than me, fortunately. 3. All the rigamarole I'll have to sort through on the accounts that I don't have logins for--utilities, personal cards, car insurance, etc.--I wonder if companies run into this situation often? My guess is yes. We probably aren't the only couple in America that divides up responsibilities and doesn't sit down to exchange passwords and account information. Luckily we have each other's phone lock codes, otherwise I'd really be screwed. Off to the bank on Monday to get some things in motion. 4. Casey's newfoun...