If you’re new to my journey here at Hope Between the Hard, SDR (Selective Dorsal Rhizotomy) is a spinal surgery that helps reduce spasticity and improve mobility for children with cerebral palsy. It’s a major, life-changing decision — one that takes time, research, and courage to make.
We spent 5 days in the hospital after our daughter’s SDR surgery. It was a long week, but the beginning of something that has already been so great for her.
The Longest Day Ever: Day 0
According to the hospital, post-op days started with the following day after surgery. So surgery day was technically Day 0 for their post-op protocol. n this day, we spend most of the day sitting in the waiting room…just waiting for her surgery to be done and we could rejoin her. Check-in that morning was at 5:30am, and her surgery was scheduled to start at 7:00am. Her SDR surgery lasted about 6 hours from start to finish, and those 6 hours felt like the longest of my life. We were signed up for text updates throughout the surgery, which were nice with how long the surgery lasted because we got updates abut the surgery proceeding as expected. I wish I could say that they lessened the looming anxiety though. They were reassuring sure, but it also was a reminder to me that we were still a ways out before I could hold her again.
Waiting Room Tips
If you’re reading this while preparing for your child’s SDR (or any major surgery), here are a few things that helped us make it through that long, emotional day:
- Take breaks. Walk outside, stretch your legs, breathe. It’s okay to step away.
- Bring someone with you. Don’t go through this alone if you can help it.
- Ask for a private waiting room. Ours was a blessing — I couldn’t have handled watching other families come and go all day.
- Pack distractions. Bring books, a laptop, chargers, headphones — whatever helps pass time.
- Watch a movie. Find something you haven’t seen before so it really pulls your attention away.
- If you’re a person of faith, bring devotionals or find the hospital chapel for moments of peace.
Reunited At Last
Finally, the text came around 1pm – she was done! The surgeon closed and afterwards came to talk to us. Everything went well, and he was looking forward to seeing the results but he could already tell that her tone was much more relaxed. Now we just had to wait until she was waking up before we could go to her room. Typically with her previous surgeries, it was common for her to be out for another 45 minutes to an hour after surgeries, so we at least had a light at the end of the tunnel now! Next we just had to wait for a room to open up in the PICU so she could move upstairs and wake up to start her recovery.
Then at 2:30pm, the moment we waited for all day came. We joined our sweet girl in her recovery room!! My stomach was in knots with anticipation, relief, and worry because from this moment on we will find out if we made the right choice. Entering her room, she spotted us right away, and I went straight to her bedside to hold her hand. The medical staff were still getting her monitors and IV situated in the room, but they made room for me to go straight to her bedside.
She wanted to say something, so I leaned down to her. Then she said words that I will never forget.
“My legs feel better.”
Instant tears! It could have been the post-anesthesia, pain medications, or her social stories talking, but regardless it was the first sign we needed to start the relief.
Rest, Relief, and Gratitude
Her care plan next required that she stay flat on her back until Day 3 to prevent cerebral spinal fluid leaks. The medical team focused on keeping her comfortable, and she drifted in and out of sleep most of the day. We were thankful that her pain seemed well controlled and that we didn’t need to advocate for additional medication. She seemed to be thankful that she could watch whatever movie she wanted on loop the rest of the day.
The rest of the day was thankfully uneventful — and when you’re a medical parent, uneventful is sometimes the best word you can hear. As we tried to rest in those famously uncomfortable hospital chairs (seriously, why are they all like that?), I found myself clinging to gratitude. Gratitude for skilled hands, for the words “everything went well,” and for a little girl who reminded me once again that courage comes in small but mighty packages.
If you’re walking this same road, I see you. The waiting is excruciating, the uncertainty heavy — but there’s hope on the other side of it.
Blooming where we are planted,
A CP Warrior’s Mama
