Transverse Myelitus, March 2010

"Hey, this is not so bad. I get Disney Channel right in my room, I get to order anything I want from the food service menu, and I get to read and sleep and play playstation all day. And people visit me and bring me gifts."

Of course, Sam said this after he was drugged up for the pain and resting more comfortably. And there were more rough days ahead of him that he still didn't know about.

It all started on a Monday when Sam came home from school complaining that his legs hurt all day. That night he woke me up about 1 am complaining that his back hurt really bad. I thought he must have overdone it on Saturday mowing the entire lawn by himself with our pretty awful push mower. I gave him some Advil and a heating pad and sent him back to bed. He felt OK the next morning, just a little pain, so off to school he went. But that evening things got worse and he was up most of the night wrestling with the pain. Hot baths were the only thing that seemed to help him relax.

I took him to the pediatrician the next morning. It was a long day spent in Longview, filled with pain for Sam and frustration for me, as we left the doctor's office with no answer, waited at the pharmacy for over an hour for them to fill the prescription for pain meds and then on to the radiology clinic for an x-ray. The Tylenol with codeine didn't seem to do much for the pain, but it did help him relax enough to sleep a little when we got home late that afternoon.

Wednesday night the pain was worse, he slept so little. Calvin and I took turns staying up with him and helping him in and out of the hot bath he begged for. I called the doctor first thing the next morning and he was supposed to call me back with the results from the x-ray. When he didn't return my call I began calling repeatedly but I couldn't get through on the phone line. Codeine...hot bath...more codeine...prayers that I could know and accept God's will...finally at about 4:45 pm the doctor called. This actually turned out to be a huge blessing because at this point so late in the day the doctor decided to send us to the emergency room at OHSU instead of having us come back to the clinic. Phew! I was never happier to be heading to an emergency room. At least we were going somewhere where they could help us. By this point Sam could barely walk and he was still in so much pain. I just wanted someone to help him!
We spent several hours in the emergency room. I wasn't too worried until the doctor came in asked our permission to film Sam trying to walk. He said he would use it in his teaching. Calvin and I looked at each other after he left the room with a sudden realization, there must be something unusual going on for the doctor to make such a request.

We were shipped down to radiology where they tried to get an MRI of Sam's back, but because of the pain he couldn't hold still long enough to get a good MRI. But it was at least good enough to show that there was no major growth. The pediatric neurosurgeon was still checking in periodically with us. They finally admitted us to Doernbecker Children's Hospital about 1 am where the true barrage of doctors began, day and night. Don't get me wrong, I was GRATEFUL. We were being seen by everyone. This was a teaching hospital and Sam was an interesting case. I can't even count how many people visited to check his reflexes. His presentation of symptoms was odd and the diagnosis wasn't going to be easy. The staff pediatricians were awesome, and the neurologist, Dr. Coryell, became the most treasured visit every day. He was the one who would make the final diagnosis. But that diagnosis didn't come until after a 4 hour MRI under complete sedation, a spinal tap, and numerous blood tests. By this time Sam had lost most of his reflexes in his legs and he could barely walk a few steps. He also lost his ability to pee on his own. Let me tell you this, holding your 10 year old boy down while he is being catheterized, as he begs for something to bite on, is not an experience a mother can even forget. But he was trooper. It was a lot of stinking pain, for days, that he dealt with and still he kept his pleasant ways about him. That is, until he started on the massive doses of steroids. "These steroids will probably change his personality," the doctors told us. They weren't kidding! Actually, he never really got that bad, but he was more aggressive and definitely not as content as he normally is.

Nine days is a really long time to stay in the hospital. I slept there almost every night and ate fast food or out of a drawer of snacks we brought from home. Once the diagnosis was settled on, we were cautioned that this could be a long-term issue we would be dealing with. But I felt otherwise. Sam had been administered to by Calvin and Brian English early on Friday morning and many people were praying for him. I just felt like this was going to turn out OK. And I told the doctors that. I told them to do whatever they needed to do to help Sam heal, but that I knew that he was going to recover.

Miracles do happen. Almost immediately after the start of the steroid treatment Sam's reflexes improved. And he began to walk. The nurses were pretty amazed when he progressed in one day from barely being able to walk to the bathroom to doing laps around the hallways, even pushing Becca in the wheelchair. "Wait, something's wrong with this picture," they would call after the deviously grinning little guy.

And things just went from good to better. The initial plan was that he would be moved from Doernbecker to the pediatric rehab unit at Legacy for a two week stay. The next day he had improved so much that the plan was to send him home to begin out-patient physical therapy. Thank goodness for Aunt Tracy who came on Friday to take Sam home so Calvin and I could fly to Utah for Heather's Senior Recital. And thank goodness the next week was Spring Break so we could regroup.

On our first trip back to see the neurologist and the physical therapist, just a few days post hospital, Sam was given a clean bill of health and told to go home and live a normal life. Dr. Coryell told us he hoped to see us Powell's Books sometime, but never in his office again.

Transverse myelitus is a swelling of the spinal cord. They don't really know what causes it. It can be the body's immune system going awry in response to a viral infection. One third of the people who get transverse myelitus never walk again. Another one third have long-term lasting effects. And one third fully recover, but typically after some serious rehabilitation and time to heal. Sam went back to school the first day after Spring Break for a full day, he joined the swim team and he is as busy and active as ever. There is a reason why Heavenly Father wants Sam to walk. This I know.