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. Hoping 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.