8 things to know

Here are 8 things to know when you go into surgery:

  1. Don’t eat or drink after the hospital tells you. For me – that means no food or drink after 10:30 pm on Thursday.
  2. My caregiving team (i.e. mom and dad) should bring a book because they have to wait while I’m in surgery. Mom, what a great time to read the draft of the book I wrote!
  3. Be clear with the doctors, make sure my parents and I understand what’s happening, and ask questions (watch To Err is Human). Use Google Live Transcribe so that I can better understand what’s being said because I have AN (auditory neuropathy & hearing loss)
  4. Plan on watching mindless tv shows or videos because you’re going to be really groggy and pain medicated. Hope that the hospital has the channels that Premier League football and Twins are on.
  5. Bring comfy easy-to-put-on clothes along because when you are discharged, you are going to want to get the f**k out. It’s less painful for me if I have easy-to-put-on clothes because I need other people to get me dressed because I have cerebral palsy (CP).
  6. If you’re staying overnight, don’t think you’ll sleep well because if you are either a light sleeper or a mom, you won’t get any sleep. Especially if you’re like me and have sleep apnea, the beepy thing beeps a lot all night long. And nurses come in and check your pulse, blood pressure, IV’s, etc. My dad is pretty good at sleeping just about anywhere.
  7. Hope that you are not in the hospital for more than two days. The last surgeries I had for putting in my DBS (deep brain stimulation), I was there for a week. That was more than long enough for me!
  8. Get a gallon of coffee because if your parents/guardians/friends/partners are anything like my mom, they are going to need lots of coffee. Thanks to Ronald McDonald House for helping take care of the caregivers and having good coffee for my mom and a nice place for my dad to get breaks, too.

I will have one more post by Wednesday at the latest, going more in-depth about the surgery the doctor will be performing on the big toes and then my mom is going to do a guest post after the surgery. The photos shown are of me in the hospital when I had my DBS surgeries 4 and 5 years ago (yes, did this one twice + one time to have the first one removed!)

Another song for my hospital playlist: Brave by Sara Bareilles

“Maybe there’s a way out of the cage where you live
Maybe one of these days you can let the light in
Show me how big your brave is”

Dad holding Justin in hospital bed

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

The Interrupters up close

Amazing concert on Wednesday at the Varsity Theater! Can’t even describe how awesome this concert was! The pictures say it all – this band is energizing and exciting. Justin and dad in front of theater marquis for sold out Interrupters April 3After the last song, the band threw t-shirts, drumsticks, guitar picks, and sheet music out to the crowd. The lead singer, Aimee, saw me and brought me a hat! And I got a hug – after she asked if it was okay to give me a hug! It’s always good to ask!

You’ll never believe this – the manager noticed us and asked if we’d like passes to meet the band after the concert. I still can’t believe it!

We hung out while the crowd left. And then got to meet the band – who by the way are incredibly nice and cool! They didn’t know it, but it’s going to be a rough several months for me after my foot surgery in 3 weeks. This concert and meeting them, is going to make it easier to go through the rough times. Thanks Aimee, Kevin, Justin and Jesse! Never underestimate the impact you have on people who are going through hard times.

Fight like a title holder 
Stand like a champion
Live like a warrior
And never let ’em break you down

Title Holder YouTube video

Finally, the Varsity Theater in Minneapolis was very accessible for me. After getting our tickets sorted out, we went to the reserved spot that was right up front to the left of the stage. We didn’t check out the accessible bathroom so can’t report on that. My chair elevates so I raised it up to standing height and it was amazing to be so close to the stage. The security guys were awesome – gave us water and earplugs and were really nice.

Interrupters on stage

Can’t wait to see the Interrupters again. Maybe Duluth in July??? Hopefully am recovered from surgery by then!

Find out more about the Interrupters and their concert tour on the Interrupters website.

Justin and Kris in concert crowd

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!