Monday, February 18, 2013

The Going Gets Tough

Today, I noticed that I haven't had a blog post in nearly two weeks. February's been a rough month around our house.  Don't get me wrong...there's always some measure of insanity around the ol' homestead, but these last two weeks have really been tough on all of us.  Here's a glimpse into just one of the many, many things we've been dealing with over the past fortnight:

On February 7th, Owen, Josh, my grandpa, and I made the trek down to St. Louis Children's Hospital.  The trip was by no means an unfamiliar one.  When Josh was but a wee little thing, he had a couple of visits with the neurosurgery department and another with the ophthalmology department.  I have nothing but good things to say about St. Louis Children's.  We have always gotten impeccable care there.  Doctors in tune with the needs of little ones.  Infinitely patient nurses and lab technicians.  The coolest cafeteria I've ever seen.  A fun environment suited for children. Virtually no wait times.  The place is really a master class in children's medical care. On this trip, we were headed down for a second visit to neurology with Owen.

Over the past few months, Owen has been having fairly frequent staring spells.  He'll sort of drift off into the abyss and have a little private party there for about ten seconds or so.  After that, he rejoins the rest of us, with no lasting effects from the episode, nor any memory of anything happening (at least as far as we can tell).  I'm ashamed to admit that I never really noticed anything strange going on with him.  Sure, I knew he kind of "zoned out" from time to time, but who doesn't?  While we were at speech therapy one day, his pathologist (who is BY FAR the kindest, most patient person - let alone medical professional - that I have ever met) noticed one of his spells and expressed her concern that he might be having absence seizures.  It didn't take long for me to notice his spells around the house from time to time.  Concerned, I sent an e-mail to his preschool teacher to ask her to be on the lookout for any strange spells in the classroom.  She e-mailed me back nearly immediately.  Apparently, Owen had been having the same sort of episodes in class nearly every day.  She was extraordinarily apologetic about not having put two and two together before then.  I can't blame her...I didn't either, and I don't have ten special needs toddlers running around my house.

After a consultation with our pediatrician, we were sent to St. Louis Children's back in January to meet with a neurologist there.  It was the most complete examination I've ever seen given.  The doctor spent a full hour with us, looking over every inch of Owen's body and asking every possible question in the world...and I do mean every question.  I present for your consideration, this exchange:

Doctor: "You two (motioning to Bill and me) aren't second cousins or anything like that, are you?"
Me (laughing): "Uh, no."
Doctor: "It happens more often than you might think."

After the exam, we were sent on our way home, with orders to return in two weeks for an EEG to check for seizure activity and instructions to pinch Owen...hard...whenever he had a spell.  The neurologist's belief was that if Owen was just spacing out, he wouldn't be able to ignore pain, so the pinch would jolt him back to reality.  If seizures were truly present, the pinching would have no effect, and we'd have an idea of just what the issue was.

Upon returning home, the "opportunity" to pinch Owen came very quickly.  My parents invited us over for dinner, and Owen had a spell.  Bill leaned over and pinched him.  Owen instantly started crying and said, "What did you do, Daddy?"  My mom came to Owen's defense leaning over and pinching Bill. :)  After that point, every spell went the same way...staring, followed by pinching, followed by renewed alertness.  We were hopeful that this meant that Owen was just having a little "time out" whenever he'd have these spells and that seizures were not present.

When the day for the EEG finally rolled around, I was pretty nervous.  Josh had an EEG when he was five, and I distinctly remember him being very agitated by the time all was said and done.  In case you've never seen an EEG in person, it goes a little something like this:

The technician measures all around the child's head and makes several marks to indicate where the electrodes will be placed.  The technician then goes over each of these marks with a cleanser, so that the electrodes adhere properly.  The electrodes are then attached to the area with an adhesive.  In many cases, the child's head is then bandaged up to prevent the child from tugging at the electrode wires.

By the time Josh had gotten all hooked up for the EEG, he'd had more than enough.  I dreaded going through the same experience with Owen.  With his autism and sensory processing issues, I had no idea what we were in for.  I prepared myself for one very upset child.

I didn't prepare enough.

Owen wasn't upset.  He was hysterical.  He doesn't like to be fiddled with in general, and on the head in particular, so this was especially troubling for him.  After the technician made maybe the second mark on Owen's head, it became apparent that I was going to have to physically restrain him.  It was absolutely brutal.  He screamed.  He thrashed.  He cried.  He pleaded.  Nothing consoled him.  Not toys.  Not games.  Not TV.  Not even Angry Birds, which pretty much cures all of his ills.  He begged for Bill, who was unable to make the trip with us that day.  He begged for his Papa Sonny, who was holding court in the waiting room with Josh.  The technician, bless her heart, was the picture of patience - a true testament to just how relaxed the St. Louis medical professionals are with children.  Indeed, once Owen was finally hooked up to the machine, she said, "That was nothing, Mom.  I've had much, much worse."  I can't imagine much, much worse.  It was easily the most traumatic hour-and-a-half of my life, not to mention Owen's.

Once Owen was all hooked up to the electrodes and had his head bandaged, he grew still, completely exhausted and emotionally defeated.  It was probably the saddest thing I've ever seen.

Poor little boy...I think he'd give up at this point.

The one saving grace of the whole proceeding was that Owen was so tired by the time the prep work was done that he lay perfectly still for the actual test.  He asked the technician to give him a blanket, turn on Sesame Street, and turn off the light. :)  I think if the test had lasted another ten minutes, he probably would have fallen asleep.

When all was said and done, we headed out of the hospital and made the long trek to the sixth floor of the parking garage.  We got him loaded up into the van and headed for home.  By the time I had driven down to the fourth floor, he was sawing some serious logs.  He was really out of sorts for the rest of the day (don't blame was I!!!)

We finally heard back from the neurologist at the end of last week.  There was no discernible seizure activity on the EEG.  Given those results and the fact that he perks up whenever he's pinched during an episode, the doctor feels confident that he isn't having seizures.  He believes that whenever the world gets to be too much for Owen and his autism, he just checks out for a minute.  That's certainly better than the alternative.

Thanks to everyone who's been praying for Owen over the past several months.  Since we first learned of Owen's episodes, our friends, family, and church have been bathing Owen in prayer.  We are so blessed to be surrounded by a community that cares so deeply for our little guy!

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