On Friday, December 12, Sebastian seemed perfectly fine. He complained about both his feet falling asleep in the morning when he woke up, which seemed like no big deal at the time. The following morning at hockey practice, Sebastian complained about his shins hurting and was falling down on the ice a lot (which also seemed like no big deal at the time — he did the same thing when his glasses were hurting his head during a previous hockey practice). Later that same day at the mall, Sebastian was stumbling and scuffing his feet on the floor, but it seemed like no big deal at the time because he was wearing brand new (bulky) winter boots. On Sunday morning, however, Sebastian was walking very awkwardly in our apartment in sock feet, and kept falling down. He was bending forward at his hips and his legs were turning out to the side when he took steps. The big alarm came when my wife pinched his back really hard to test his nerves and he didn't feel a thing. At that point, we headed to the emergency room. After about 7 hours and an MRI later, Sebastian was diagnosed with transverse myelitis.
Transverse myelitis is a condition affecting the spine which in turn affects other parts of the body. "Myelitis" refers to a swelling in the spine, and "transverse" tells you that the swelling goes across the width of the spine, affecting a cross section of both the left and right sides. Due to the portions of the spine affected in Sebastian's case, this caused the tingling in the feet, lack of balance, and numbness in the back. Unfortunately, when the inflammation of the spinal cord is reduced, the affected areas do not automatically return to their original functionality. The scariest part of transverse myelitis is that the recovery rate is split about evenly into thirds:
About one-third of people affected with transverse myelitis experience good or full recovery from their symptoms . . . Another one-third show only fair recovery and are left with significant deficits such as spastic gait, sensory dysfunction, and prominent urinary urgency or incontinence. The remaining one-third show no recovery at all
Doctors told us that this would require a hospital stay over a period of weeks. Our most favorable estimate had us leaving right after Christmas.
Sebastian was placed in the PICU and started daily steroid treatments that would assist in reducing the inflammation in his spinal cord. The following day, he was moved to the Step Down Unit, and the day after that (Tuesday) he was moved into a semi-private pediatric room. By the time he reached his semi-private room, Sebastian had two MRIs, a spinal tap, two IV attempts, an EEG, and the standard casual poking and prodding by a dozen medical professionals.
On Tuesday, Sebastian had discomfort in his back, most likely caused by laying in bed for so long. When asked to move his legs, at times he could move his left leg to the side about half an inch, and sometimes not at all. His right leg showed more progress, moving about an inch off the bed. He was also completely unable to lift his head or back off of the bed.
By Thursday, the physical therapist and occupational therapist were able to get him out of bed and have him walk about 60 feet to the nurses' station and back to his bed. I think this accomplishment gave Sebastian the self-confidence and motivation to start working toward recovery, because the next morning he wanted to walk past the nurses' station. And on Friday, he was discharged from the pediatric ward and admitted to the rehabilitation center on a different floor.
Though the move to the rehab unit was a blessing for us, it was not that great a move for Sebastian. He went from a floor filled with kids, nurses who deal with kids all day, video games, and lots of kids activities. He moved to a floor filled with almost entirely elderly people and nurses who were used to dealing with mostly old people. The upside is that we moved to a brightly lit hallway, a fully private room, and a floor filled with people who weren't sick, but were getting stronger. By the time Sebastian reached the rehab unit, he was moving around (too quickly) with the assistance of his walker. He was really enjoying the freedom of being mobile.
Today, December 23, Sebastian came home after 10 days in the hospital! Here is footage of him leaving the hospital and of him arriving home:
As you can see, he is able to walk independently without any real help. You will see the tan gait belt around his waist, which basically just gives him three handles that we can grab if he slips or falls. They are very nice for when he is walking over slippery surfaces.
Though Sebastian has recovered delightfully well, he does still have plenty of work ahead of himself. His "core" muscles are very weak, which causes him to have trouble balancing. Thus, he will continue to do exercises each day and see a physical therapist on a regular basis to strengthen these important muscles. After just a couple days of PT, we can see a marked improvement: He couldn't stand back up from a squatting position on Saturday, but today he can do a few squat/stands in a row.
We have to thank all the people who have prayed for Sebastian over the past 10 days. The amount of prayer he has received is overwhelming; I know he ended up on at least three church's prayer lists and we have heard from dozens of friends and acquaintances who have prayed. Please keep praying for Sebastian's continued recovery and strength! Sebastian is looking forward to getting back to school after the winter break and is hoping to get back out on the ice for hockey as soon as possible!