Edward, age 4
Ornery and mouthy.
Cute and charming.
Lover of attention.
Edward’s spinal cord tissue had attached itself to his spinal column.
Or so they tell me. I mean, I believe them, I just know nothing about it!
I do know this disorder is progressive and can be the cause of leg deformities, back and leg weakness/pain, incontinence, and scoliosis.
Spinal Cord Detethering
Surgically removing the spinal cord tissue from the vertebrae.
Or, as Edward explains it, “Wear the mask, go night-night, wake up, have little ouch.”
We were told the surgery could last anywhere from two to five hours. It actually took less than one and a half.
DATE AND LOCATION OF COMPLETION:
September 18, 2015
St. Louis Children’s Hospital
Edward fared very well. Better than Mama, honestly – I got a head cold out of the deal.
Edward has a four-inch incision along the lower part of his spine. He’s actually very willing to show it off, if you ask. Or, if you barely make eye contact with him.
To ensure spinal fluid did not leak, he had to lay flat on his back for 48 hours following the surgery.
The doctor originally told me Edward would be sedated for those 48 hours. Apparently (APPARENTLY) there are different levels of sedation. Like, sedation does not always mean “asleep.” It can mean, “We took the edge off, but now you need to entertain him for 48 hours without letting him move. At all. Good luck and goodbye.”
My mom (who accompanied Edward and I for this hospital stay) and I had brought all kinds of books and projects with us. I mean, if Edward’s just sleeping peacefully, I may as well be reading a book or writing some blog posts or something.
Despite only receiving minimal sedation, he really did well. It hurt to move, so I think he was ok with laying still, for the most part. He spent those “sedated” 48 hours in the PICU.
Twice, he did have intense back spasms. They were awful to watch. As his back would spasm, he’d clench his whole body and draw in his legs. He screamed and cried in pain. Then, the spasm would calm, and his body would visibly relax, but he’d continue crying. His crying appeared to make the spasms worse, but there was no reasoning with him or calming him down during those times. The doctors tried a few different things, but eventually figured out the right medicine concoction to calm the spasms.
While he was in pain, Edward kept talking to his back; this comes as no surprise to anyone who knows our child well, as he is ALWAYS talking. It was so sad though, as he would yell, “Stop it ouchie! All done!” After the first set of spasms, he told me, “Mama, Edward said ‘All done, ouchie,’ but the ouch didn’t listen!” During his second set, he started to threaten the ouchie. “Ouchie! Stop it! You better listen or go to time out! You in time out!”
It’s like he’s heard those phrases before.
Following the PICU stay, Edward was moved to a regular hospital floor. The accommodations were fine, but I was sick and ready to head home at that point. Also, Edward was tired of being confined to his hospital room, so we quickly became more adventurous.
Down the hall from this room was a physical therapy room. We received permission to be in there and to use the floor mats in addition to the other padded equipment. The change in scenery helped Edward become brave enough to stand with minimal assistance, but he wasn’t quite ready to take any steps yet.
Early the next morning, he was tired of having his vitals checked every four hours (you would have sworn the blood pressure cuff was breaking his bones), so he asked to go for a walk. I held him upright while he shuffled his feet. While on our “walk,” we saw his nurse. I said, “Show Miss Ashley how well you can walk!” And at that, he let go of my hands and walked 20 feet like he’d been doing it all morning.
And from then on, this mama stopped babying him…
For the next half an hour, Edward wanted to walk all the way around the hospital floor. He was slow moving (partially his recovery, partially his nosiness – he had to peek in every room), but he circled the floor three times with minimal help.
After I persuaded him to rest for a bit, the physical therapist stopped by. She stretched his legs and mentioned she was surprised his hamstrings weren’t tight after three days of laying down. Then she said, “Ok, bud. Let’s get you up for the first time since surgery.”
My mom and I laughed and laughed. We explained he’d already made morning rounds – three times! We supposed that’s why his hamstrings weren’t tight! The therapist watched him walk ten feet and promptly wrote his discharge papers.
Edward acts like he never had surgery. By Wednesday – five days after surgery – he was doing somersaults off our couch. I stopped giving him pain meds, because I thought if he could feel the pain, he might slow down a bit.
I told one of the pre-op nurses I had a list of things I was hoping this surgery would correct. It was as follows:
- stunted leg growth
- worsening scoliosis curve
- bad attitude
She mentioned the forth one would probably only get worse with surgery and all the attention of recovery. She was right.
So far, we have seen major improvements in potty training. I didn’t expect to see the results this soon, but we are pleasantly surprised.
I guess we’ll just have to wait and see about the other three things on my list.