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

 

 

Tearing at the seams

Perfect paradise, tearing at the seams.

– Imagine Dragons

One of my favorite bands, Imagine Dragons, has this line in Bad Liar. When the song came out, I was in a place of pain and this helped me forget. This was actually last fall and the pain has been at a steady 6 with jumps to 9 out of 10 for so long. Just to recap –have seen multiple specialists over the past 5 months figuring out what to do.

My surgery is now two weeks away on April 26th. I’ll have two months of pins in both of my big toes and recovery with lots of lying around in bed, watching Netflix, Amazon Prime and On Demand. For the next couple weeks, I’ll be putting together my playlist for the hospital – the music that makes me feel strong!

I am going to have my mom post as soon as she can after my surgery to let everyone know how I’m doing. Justin smiling with concert crowd behind

So look me in the eyes
Tell me what you see
Perfect paradise
Tearing at the seams
I wish I could escape it
I don’t want to fake it
I wish I could erase it
Make your heart believe

-Bad Liar by Imagine Dragons

 Bad Liar on YouTube How awesome that it’s captioned!

Previous posts about toe-mageddon

To Err is Human

I watched a documentary, To Err is Human, with my mom and dad last weekend. Like Cal Sheridan, who is featured in the film, I also have kernicterus because of a medical error. Did you know that medical errors are the 3rd largest leading cause of death in our country? There are as many as 440,000 preventable deaths every year. Far more than that are living with the long-term impacts or injuries from medical errors. For me, it means severe cerebral palsy, auditory neuropathy, visual tracking difficultiesBlack and white photo of dad holding baby Justin, and some messed up toes. Had my newborn jaundice been tested and treated in time, I may have had a very different life. But, it wasn’t – and I don’t have that different life.

Watch this documentary and find out more about what we can do to improve the medical system so that it’s safer for all of us. We NEED to do this!

Surgery

Speaking of medical stuff, my toes surgery is on April 29th  with a night or two in the hospital. My mom is going to write a guest post after to let everyone know how I’m doing. I’ll have surgery on both big toes with a couple months’ recovery. Hoping for relief from the toe-pocalypse although I also know that surgery and recovery will mean it’s going to get worse before it gets better. Foot xray showing bent big toe

Interrupters

Until then on to crazy fun April starting with Interrupters concert tomorrow night!!! Favorite songs: She’s Kerosene and Got Each Other (featuring Rancid)

We don’t have much but we’ve got each other!