Stem the tide

I’m social distancing at the moment with my family. Let’s talk about how scared I am and then what we can do to slow the tide.

How scared are you?

A bit. I think that it terrifies me that I could be one of the worst hit by COVID-19, but what you gonna do? I distinctly remember my Washington DC trip, my mom can explain what happened on the trip. And ask her thoughts on coronavirus.

MOMJustin sitting in wheelchair with communication device, mom sitting next to him

Hi, I’m mom. In 2009, we took the boys to Washington D.C. for fall break. The first day started off promising. We had a tour of the White House, scratched the President’s elevator with the footplate of Justin’s wheelchair, and explored the American History Museum. By late that afternoon, Justin had a high temp and all of the symptoms of H1N1. The next day, we started contacting our health insurance and clinic to find out what we should do if it worsened. As it was, even though it was scary, fortunately, Justin started feeling better after a couple days holed up in the hotel.

The scary thing, is that when Justin gets sick, he tends to get sicker than others. Breathing gets more difficult and coughing is a struggle. Care giving gets exhaustively harder. When Justin gets sick, which thankfully, isn’t often, he can get really low tone (kind of like dead-weight with sporadic high tone and jerking if in pain). This means two of us are needed to lift him up in bed to give drinks of water or to transfer from bed to wheelchair to toilet chair. If uncomfortable or waking often at night, then dad and I both are up multiple times through the night. People may not realize that Justin needs someone to help with all daily cares. So, we’re trying to create a “virus-free-bubble-zone!” So, I’m beyond scared of Justin, or really anyone in our family, getting COVID-19.

11-year old Justin with younger brother and dad, White House in background

BACK TO JUSTIN

Because we’re in these uncharted waters, I want to talk about how we can slow the tide so that we don’t overwhelm the hospitals for those who truly need it.

What can we do to slow the tide?

  • Practice social distancing- look, I know it is easy to not do this. We are a social species and will always be, but we don’t want to pass coronavirus around like a viral tweet. For now, I’m just hanging with my family and we still have 2 personal care attendants who are able to help me out.
  • Don’t hoard masks or anything- you are potentially taking away from someone who needs it.
  • Wash your hands regularly- just basic advice from every single health organization, 20 seconds.
  • Loved this bit on John Oliver’s show from 3/2/2020 about Vietnam’s Coronavirus wash your hands Tik Tok dance challenge video.
  • Check the CDC’s COVID-19 website for more updates or my favorite info is from Minnesota Department of Health Coronavirus website. Find your state or country’s trusted source of information on this one.

What am I doing to keep busy?

  • Same as usual – editing my book, writing blog posts, reading a lot of books using Bookshare.org, listening to lots of great music, watching YouTube, and hanging out with my family.
  • Last night, my grandma came over for dinner and we Google chatted with my aunt and cousins in Kentucky. Don’t get to see them in person very often so nice to have tech that helps keep us all connected.
  • It’s going to be warmer this week, so will get out of the house and go for some walks in the neighborhood (while keeping distance from others) or just get outside in our yard for a bit of sun.

Take care of yourselves!

 

 

Day 10

Guest post by Mom (Kris Schulze)

Justin had his followup visit with his surgeon on Friday and all is looking good. We ended up removing part of the cast to be able to see the incision. So, now he has a cast over his entire foot since it was the only way to recast the part covering the big toe without redoing the entire cast. This cast will need to be replaced in 3 weeks. He will have light sedation for that as it’s the only way to hold his leg and foot still and steady enough to be able to recast. We’re still looking at the end of June for removing the pins which will be a heavier sedation procedure.

All in all, it’s been a pretty exhausting week for all of us. All transfers and lifting require 2 caregivers now. Pain meds in the middle of the night means 2 of us up – dad to hold Justin up and me to give him meds and drinks of water. The past couple nights he’s had some longer stretches of sleep between needing meds or readjusting legs and pillows (waking every 3-4 hours instead of every 1-2 hours).

We’re trying to cut back on the heavier duty pain meds during the day so that Justin has the energy to do a bit more of the things he loves to do – like read all of the well wishes on Facebook and his blog (thanks all for those!), finish reading a book, and catch up on his favorite YouTube videos (John and Hank Green, Daily Show, John Oliver, and music videos). This first week, though, time upright was mainly spent eating meals and towards the end of the week was able to spend a bit of time on his computer. Highlight of the week was watching AFC Wimbledon’s last match – they stayed up in the 3rd tier (Justin made me add this sentence)! Most of his time this week though was spent surrounded and propped up by pillows either sleeping or watching movies. Justin sitting in wheelchair with casts on legsHoping that this next week, Justin will have less pain, more energy and be clear-headed enough to write his own blogpost and have more time at his computer! The computer is where he is most independent – where he can read, watch what he wants, write and connect with the world. And, really hoping that we all get more sleep!

Innovative idea for the week – after Justin scraped the inside of his knee with his cast and multiple knuckle scrapes for his dad and me – his dad cut off the toes of his old Ankle Foot Orthotic (AFO) socks to cover up the rough cast. Justin now has scrape-free casts.Justin sitting in wheelchair by computer