Currently | Two years post-accident and busting one of the biggest spinal cord injury myths.

Sept. 19, 2024 - Sept. 25, 2024

From the moment I heard the words, “He has a spinal cord injury,” my thumbs went to work. I googled medical journals, joined Facebook forums, watched videos on YouTube trying to glean every single piece of knowledge I could find.

Like most things in 2024, the concept of a fact hardly exists on the internet. There is an insane amount of conflicting information out there piled on top of the fact that no two spinal cord injuries or recoveries are the same. Before I came to grips with the severity of his injury, and even more, before I found my voice in being his advocate, I leaned on his medical team even if it left me feeling unstable.

Overall, I believe we were pretty lucky. We’ve heard stories that had us gasping with wide eyes and left our jaws on the floor. We have a few of those stories to tell ourselves, but we’ll save those for another post.

Even though he was confined to the four walls of the ICU for what would end up being 17 days before breathing fresh air, everyone else had a life. Doctors, nurses, physical therapists, occupational therapists, speech therapists, wound care and whomever else I am missing — they all went home. And when they went home, someone else took their place.

Naively, I expected the staff who was new to us to have the same protocol as the original staff. That was not the case.

Depending on the crew for the day, minor disagreements ensued, but there were two massive things they had discrepancies over:

1. To stretch or not to stretch his fingers.

2. How often to cath him.

One OT blew up medical gloves and told us to interlace his fingers with those on the gloves in order to keep his fingers stretched. The following day, our original OT’s eyes bulged out of her face at the sight of them. She grabbed a fork off his tray, popped them both and pointed at the papers taped to the wall.

A few days prior she brought in an array of brightly-colored paper and asked Cody to choose two colors. It will come as no shock to you that he chose teal and orange. I don’t remember what was printed on those pages, but she hung them on the wall as a reference. She also went over them with us, and had I been in a different sate of mind, I likely would’ve retained the fact they boldly stated not to stretch his fingers. But still, shouldn’t the one who blew up the gloves and told him to stretch his fingers know that? One would think so.

No one knows really about spinal cord injuries. That’s why some tell to stretch your fingers and some tell you not to. Everyone has their own opinions. I’ve never had a spinal cord injury, so I didn’t know what to do. It’s not like pulling your hamstring. You just put some ice on it, put some heat on it, rest it. I just felt confused.

I knew no better at the time, but two years into this, I can tell you she saved his finger dexterity. If you are new to the spinal cord injury world — do not stretch your fingers forcibly! Stretching them out to prevent contractures for short periods of time a few times a day is one thing. Splinting them to be forced straight for lengths of time is an entirely different thing. People from all over the world send us pictures or videos of their hands that are pancake flat with no tension from being forced straight via some type of splint or binding method. If you are able-bodied, lay your hand in a relaxed position, palm facing up on the table, and you’ll notice that your fingers curl. To have them stretched flat all of the time would require effort and constant tension.*

*The information, including but not limited to, text, graphics, images and other material contained on this website are for informational purposes only. No material on this site is intended to be a substitute for professional medical advice, diagnosis or treatment.

Before I get into the catheter situation, let me take a deep breath.

(Inhales deeply, exhales slowly)

Ok. Here we go.

Let me give this to you in layman’s terms first. One without a spinal cord injury, and assuming he or she has a normal functioning bladder, can hold somewhere around 200 ml of urine before getting the sensation to urinate. From there, although it is not advised, one can hold his or her bladder for a couple of hours. According to the National Library of Medicine, the urinary bladder can store up to 500 ml of urine in women and 700 ml in men.

For about 10 days, Cody had a foley catheter, which is an indwelling catheter meaning it’s constantly draining his urine. After that was removed, he was being cath’ed externally based on a six-hour protocol. With spinal cord injuries, there is a high risk of getting UTIs, so it’s a delicate dance as you run the possibility of infection each time you insert a catheter.

We ended up with two camps of nurses. Camp One had the theory that we could not cath a single minute before the six-hour mark because that was the protocol. Camp Two saw his poor belly was distended to appear seven months pregnant and cath’ed him as needed.

Not knowing where to set up camp, I didn’t flinch when they removed THIRTEEN HUNDRED MILLILITERS OF URINE!!

Imagine you are filling up a water balloon. You attempt to put twice the amount of water in as what is meant to fit inside. You’re well beyond the rebellious stage of filling it more than you’re supposed to, and now you’ve turned your face from the faucet, eyes squinted, knowing full well the balloon is going to burst at any time. This is a human they’re dealing with though, not a balloon.

As soon as they taught me how to cath him, I took matters into my own hands. Grateful they had a task removed from their list, not a single person ever asked a word of how often we were cath’ing or what he was voiding.

More on this topic at a later time. Until then, I tell you this to say that all of the mixed messaging left me discombobulated with the exception of one thing: how long he had to recover.

Nevermind the cath protocol, to stretch or not stretch his fingers, or any other conflicting messages. There was one firm message we heard loud and clear across the board from every medical professional at both hospitals we were at: he had two years to recover. After two years, he wouldn’t recover anything else.

Because they were conflicted on most things but on this, I took this seriously. It was written in permanent marker, tattooed in ink. It was the lone fact not living in the grey area, and every time I heard it, it cut deeper. Every moment we weren’t doing therapy was a waste of our time. The clock was ticking, and it wasn’t on our side.

I felt like wow, that’s not a lot of time. But it’s still some time, so a lot can happen in two years. It’s more than 700 days you have to get better. You just have to go one day at a time. You’re gonna get tired, but as long as you put in the work a couple times a week, that’s good.

And then we met Maria.

For those who follow us on social media — EGG-SACKT-LY! You know Maria well. For those who don’t, she is our physical therapist from Portugal. Much, much more to come on her in another post.

When we met her, she was in the states with three others who had spinal cord injuries for 15+ years and were still recovering movements that we saw with our own eyes. A few words exchanged in broken English, and we quickly learned the two-year timeline is absolutely bogus.

I shared this information on Instagram recently, and I received too many messages from those with spinal cord injuries and their caretakers who are coming up on the two-year mark sharing their massive relief that this issn’t true. It infuriates me. Having a spinal cord injury is devastating enough, and recovery is slow. But there is no hard and fast timeline.

If you or a loved one has a spinal cord injury, please know that there is no timeline.

We are officially passed the two-year mark, and here are Cody’s latest moves…including trying to dress and undress standing up for the first time. Prepare yourself!