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

Never give up – GOAL!

Last Saturday, AFC Wimbledon, a third-tier fan-owned football team, beat West Ham United, a Premier League team, in the fourth round of the FA Cup. I don’t want to alienate people who support West Ham, so I am not going to talk about the game. Instead I am going to tell a personal story about never giving up.

Five years ago, I tried deep brain stimulation (DBS). I wanted to see if it would be helpful in downplaying the jerky movements that are completely annoying and make it hard to do what I want to do. Two weeks after the second surgery, my stimulator was inflamed. I went to the emergency room right away and found out I had a staph infection. I had two choices: take everything out (stimulator in my chest with wires threading up my neck to the top of my head and then leads going to my basal ganglia deep in my brain) or keep it in for as long as possible.Justin laying in hospital bed, brother sitting in chair with game controller

I knew that I would have to put heavy duty IV antibiotics in my system, but initially wanted to take it out. I was hurting and you should never make decisions when you are in severe pain. Along with my parents and doctors, I decided to keep the DBS in as long as possible to see if it helped me more easily do the stuff I loved to do.

Flash forward three months, the infection couldn’t be managed with the antibiotics. It had traveled from my chest to my head and the DBS had to be taken out. The worst part was that it was working. I was sitting up on the side of the bed (check out the video links down below) and I could make a peace sign. You may think “big deal,” but it’s the first time I had ever been able to do these things. I could even flip people off – every 15-year old should be able to flip someone or something off occasionally.

One year later, I tried DBS again – without a surgical-site infection this time. I didn’t give up on my hopes that DBS would make my life a little easier.

Congratulations to AFC Wimbledon on making it this far in the FA Cup after losing almost all of their league games. Every Saturday, I watch them because I’m a huge fan. Many of my readers know that I’ve been dealing with a ton of leg and foot pain. Whenever I watch AFC Wimbledon, my pain is pushed to the side. My message to AFC Wimbledon – don’t give up!

You’ll find me at The Local Restaurant & Pub in Minnesota on 2/16 cheering on my favorite English Football team!

Justin watching tv in pub

Update on the foot/leg pain

No botox this week because doctor wants me to see another orthopedic ankle/foot specialist to determine what we do with my semi-dislocated-ish toe. It was the coldest day ever in Minnesota for this doctor appointment! Negative 50 Fahrenheit windchill!!

Dad putting hat on Justin who is bundled up in wheelchair

YouTube videos of me after DBS

Justin talking about DBS between the first DBS Stage 1 and Stage 2 surgeries

Justin sitting 7/20/15 – sitting 5 weeks after the second DBS surgeries

Justin sitting 5 months after DBS

Previous posts about my DBS story

Faith in the Midst of Bewilderment

Frequently Asked and Unasked Questions