The day of surgery

We woke up at a Cincinnati hotel at 6:15am to ensure we could get Cole checked in on time at 7:15am. From the minute we woke up Cole, he was upset. He wanted to sleep, he wanted the ventilator, he wanted to go home, and he was all done with the Doctor.

We grabbed coffee because I’ve learned with Cole that these hospital stints are completely unpredictable and a few hours often turns into an entire day.

Cole absolutely hated the lady with the astronaut suit and I knew immediately that was because the lady a few weeks ago that tested him for Covid-19 wore the same outfit. She ended up giving him the Covid test, he hated every second of it, called her a bad seed and signed that she had bad behavior. Many other specialists came in to visit, just like every other time; Pain med team, anesthesiologist, surgeon, etc. We answered all their questions, signed all the consent forms, and kept Cole occupied with dinosaur stickers and a remote control car. We were told, due to Covid, we would not be allowed to walk Cole to the OR.

They recommended an anxiety medication 20min prior and stated this is what they were doing with older kids. Hindsight it did nothing and I would have opted for Cole to not have that medicine. However, much of being a Mother of a medically fragile child is hindsight. When they were ready to take Cole back, this is when the tears started rolling down his face and he began signing Mommy sit with me, I want Mommy. As strong as the rest of the world may think I am, I began crying worse than him. It’s one thing for a child to have to endure all the pain, surgeries, and obstacles he’s had to overcome. However, when he pleads for his Mommy and he’s balling his eyes out, it takes this agony to a whole new level. I promised him Mommy and Daddy would be by his side the entire time in the hospital and I broke my promise.

We’ve been coming to Cincinnati for 6 years and this time was a first for us. I had parked the car and dropped Mark and Cole off at the front so I led the way to taking Mark to the parked car. There were people waiting for the elevator and we are trying to social distance so we took the stairs. Low and behold, we ended up going in a stairwell that allows you to get in, but not out if you don’t have an employee badge. I couldn’t make this up, if I tried. It’s crazy, we were pacing up and down the stairs trying every door and everyone of them were locked. Luckily, for me, I married a problem solver because he noticed a phone. I swear it was something out of a movie, but you know the craziest part? It was the exact adventure and distraction I needed. But all kidding aside, what kind of sick joke is it to have a stairwell you can get in, but not out?

The doctor told us we could expect his procedure to take approximately 2 1/2-3hrs. Mark and I decided to go downtown Cincy by the river, walk, talk, and grab a bite to eat outside. We’ve been down this road before and know that outside time will be extremely limited so we wanted to take as much time as we could. We made sure we headed back promptly so Cole wasn’t waiting for us. Funny, you would think after all these years and all these procedures, we would know that it’s going to be much longer than we were told.

Almost 6 hours later we were called that Cole was done. Cole is complicated and so when he has a surgery we always hope for the least amount of complications as possible. Obviously, we really wish there were none but that’s not usually the case. I would say the Magec Rod was a success, but when the Doctor got in Cole’s back he realized Cole was too small for Magec Rods so he implanted traditional rods. This means that in 6 months Cole will have to have another invasive surgery to lengthen the rods. He also explained that due to Cole’s anatomy it took longer than expected and he had a spinal fluid leak. This means that instead of trying to sit up and get moving, he needs to lay flat as possible for 24-72hrs.

They asked if Mark and I recommended going to the ICU so Cole can be sedated for 3 days to ensure he lays flat. Absolutely not, we both said. We would rather try to allow Cole the opportunity to understand what’s going on and do his best to lay flat.

Phew, what a day! As it sits right this second, Mark and I are waiting to be transferred to a room. With this surgery, there’s a lot that can go wrong. A child could become paralyzed, a child could require a transfusion, many other complications… Worse being death. All in all, no it wasn’t perfect but it was a successful surgery and putting things into perspective, it could have gone a lot worse.