Have you read my son’s traumatic accident Part 1 and Part 2?
Before we left ICU we learned that rehabilitation was the next step. We had to make a decision this week where we would go for rehab. Would we stay in the Children’s hospital that had a rehab department or would we search for a specialized rehab hospital to go to?
Our Lowest Point
Day 6 in the hospital was the lowest day of our lives. The doctor told us that Cayden’s future could be weeks, months and even years in rehab. Before this I thought Cayden’s body might just be in shock and he’d be fine in a few days. Now it was real. He was paralyzed. His life would never be the same.
That afternoon my friend came to the hospital and we cried harder than I’d ever cried in my life. Then, we laughed because we couldn’t cry anymore. Then, she told me that her brother worked with someone who’s sister-in-law’s brother was a doctor at Craig Hospital, specializing in spinal cord injuries (SCI), in Denver Colorado. He could call us this evening if it would be helpful.
A little while later my sister told me that her husband’s sister’s boyfriend’s son had an SCI and went to Craig. It changed his life.
That same day a third person told us a story of someone that went to Craig Hospital.
God is faithful.
At our lowest moment God clearly showed us answers to our prayers – where to go for rehab. We talked it over with Cayden who was very excited to go on an “adventure” to Colorado. My mom lived in Colorado Springs, only an hour away, so that would work out well. We began the admission process. Would our insurance cover it? What if there wasn’t an open room? Would we be able to find and afford an ambulance flight to get there?
Each day we moved a little closer to certainty.
Meanwhile, Cayden continued with the OT and PT at the Children’s hospital. They showed us how to transfer him with a sling. We learned why compression stockings are needed and why blood pressure drops when you start to move vertical. Cayden experienced electrical stimulation (e-stim) for the first time. They starting teaching him how he could eat, brush his teeth, and use a pen with a tool that wrapped on his hand with velcro. It had a tight, leather pocket that you slid a tooth brush, stylus, or fork into. It was so hard.
He literally could not move his body at all from his chest down. His could move his arms just a little bit. His hands didn’t work at all. He couldn’t feed himself, blow his nose, use the bathroom, roll over in bed, use his phone, sit up, etc. The neck brace he wore left him unable to turn his head.
He finally got to take a shower on day 8. A shower was him laying in what looked like a rectangular blow up pool floaty with 4-inch edges on a gurney. He was transferred onto this and wheeled down to a shower room where two or three women bathed him. Not his favorite memory.
The admission process was finally complete. The day arrived, January 25, 2016 (17 days after his accident), when the air ambulance would take him and me to Craig Hospital. Only him and one family member could fit in the plane.
He was sick the day before we left and slept almost the whole day. He didn’t get to see many visitors to say goodbye.
In the morning he was bundled and strapped to a stretcher and transported by ambulance to the small, downtown airport in Kansas City. Our family followed and we said our good byes there before we loaded the plane.
It was a tiny plane with one seat for me behind Cayden’s head. I didn’t get to see his face the whole flight. Cayden didn’t move the entire time. He was strapped down and just tried to sleep.
Once we landed we were transported by ambulance to our room in Craig Hospital. The whole experience was different than expected. I don’t know why had we pictured ourselves sitting in lush, leather seats taking selfies as we flew into Denver. Haha. The EMT and nurse packed us up in Kansas city, flew with us, and delivered us into our room at Craig, never leaving our side. They were amazing.
And then it began…
Day 1 of a 60-day inpatient rehabilitation program.
We had the MOST beautiful view. How could we have been so blessed to get this room? Every morning we opened our blinds to the mountains, a constant reminder of God’s presence even in the midst of the hardest times.
We unpacked and set up our room. Cayden loves to organize. He would’ve loved to be DOING all of it. Instead he could only lay on the bed and tell me what he wanted.
We talked with his nurse and she explained some basics. We started watching a series of informational videos about SCI that we had to watch before we could go off the 4th floor. The videos included information about living with a SCI which included information about the spine, the skin (inspecting and protecting it from sores), the bladder and bowel, autonomic dysreflexia, bed positioning, stretching, transfers, emotional health, medications, etc. Some of it made us laugh and some of it made us scared. We learned a lot.
We met with our physical therapist for the first time. She asked Cayden to try to move different parts of his body. Since his accident he had been asked to try to move parts of his body about 100 times a day by everyone that walked into his room. It had gotten hard to watch him try with all his might and see nothing move.
But…this time his leg moved!
Therapy is hard.
We spent the next 60 days living in the hospital room and doing therapy. Therapy included learning how to move, strengthen, and live as a tetraplegic (aka quadriplegic). It included lots of education on the important things – bowel, bladder, and skin. We were introduced to different technology that might help. He began to work with Craig’s teacher focusing on one school subject at a time. He had wheelchair classes and was constantly adjusting and trying different kinds of electric, and eventually, manual wheelchairs.
Therapy can be fun.
A HUGE benefit at Craig is their therapeutic recreation department which focuses on fun. They show you how you can live a full life doing the things you loved before by adapting how you do them. This therapy is not covered by insurance. At Craig, it is fully funded by donors. This was the adventure that Cayden needed. Cayden took part in everything he could. He cooked, gardened, made crafts, made homemade ice-cream, went in a helicopter over Denver, glided over 30,000 feet in the air in a glider, ice fished, went through the aquarium, toured Bronco stadium, attended a Rockies baseball game, and so much more.
The Denver nuggets reached out to him, making a video, encouraging him to keep going. They gave our family a personal, behind-the-scenes tour where he met players before the game and watched the team win the game with a buzzer-beater shot.
His psychiatrist (a weekly requirement for therapy) blessed him with 4 tickets to see his all-time favorite player, Kobe Bryant, during Kobe’s farewell tour playing the Nuggets. This game was ON Cayden’s 16th birthday.
Therapy is a choice.
Therapy was a choice every day. As muscle movement returned, classes were added to help train each muscle to work together to move again. His strength was low after laying in bed for several weeks. He had to learn how to engage these muscles, strengthen, and teach them to work together so he could sit and walk again.
Therapy can be discouraging. You don’t see progress. You’re tired of doing the same thing. You’re homesick. You face the reality of your future. Everything takes longer and is much harder. You constantly need assistance to do the most basic things.
But, you have to choose to get up and keep going.
Therapy is painful.
Cayden definitely has experienced pain. This pain has caused some post traumatic stress when it comes to needles and tubes. He needed surgery 6 weeks post-injury to secure his fractured vertebrae. This caused new pain.
It’s soooo hard to see your child in pain.
I saw others that had even more pain. Pain including severe nerve pain, broken bones, persistent skin sores, constant spasms, and just plain old aches from soreness and injured bodies.
It was hard to see people go through this.
Learning to walk again.
After that first time he moved his leg, it never stopped. He was pushed hard to take advantage of every minute. By the time we finished those 60 days Cayden was able to walk with a gait belt. We were amazed and grateful.
But, he still had issues. He needed to build up his stamina. The damage to the spinal cord at C5-C6 was still inhibiting any messages from getting to his hands, triceps or chest muscles. He could not make his hands open. The motion when you shoot a basketball uses the tricep and Cayden did not have enough triceps to make that motion. Pushups use chest and triceps as do many other things I’d never thought about.
After the 60-day inpatient stay, we made the decision to stay in Colorado to join an intensive, 90-day outpatient program focusing on his upper body. We wanted to take every opportunity we could to see if his hands, triceps and chest muscles could work again.
We moved into an extended-stay hotel and drove to the hospital 5 days a week. He had electric stimulation on 5 areas of his upper body everyday during therapy for 18 weeks. In addition to the occupational therapy we hired trainers from the PEAK center (a state of the art workout facility for those with neurological issues attached to Craig) every day to work with Cayden. They worked him out hard and his body gained strength. Cayden loved this part of his day.
Fridays we drove to another location for Cayden to receive massage and acupuncture. We didn’t want any opportunity to go to waste.
He also continued to work with Craig’s teacher and a math tutor to complete three of his core subjects.
We could not have done any of this alone. Friends, family, and people we didn’t even know helped us. His GoFund Me page and three precious foundations helped us financially: First Hand Foundation, Chanda Plan Foundation, and Falling Forward Foundation. Cayden now works at First Hand and loves it.
Everyday for 5 months I posted an update on his Facebook page. People faithfully prayed for Cayden. They commented and encouraged us. It blessed us tremendously.
By the time we finished the 90-day outpatient program Cayden was walking without any help. His body was so much stronger. He still couldn’t run or open his hands and his triceps and chest had not had any significant recovery.
Towards the end of those 90 days Cayden was so homesick. He had not been home at all! He was tired of having e-stim every day. We just wanted to go home. On June 30th, almost 6 months after his accident, we packed our hotel and drove home.
Part IV – Life at home (coming soon)
We left a day early and surprised everyone! We made it home in time to attend my oldest son’s last summer basketball game.It was amazing to be HOME after 6 months away.