I look at that picture to the left and I think about what it’s taken just to get from there to where we are today.
I often say that Beckett will be my “Million Dollar Baby” – in that, with all his hospitalizations, he will have racked up close to $1 million in medical bills by his 18th birthday.
It’s a joke, of course. His bills are nowhere near that significant. But Beckett sure does know how to attract some of the more frightening medical conditions, complete with scary syndromes. The kind of stuff that puts parents’ stomachs on the floor.
This morning he woke me up a 6 a.m. It was the shuffling of his feet on the floor that drew my attention. Somewhere in my always on guard subconscious, I recognized that sound. The sound of improperly functioning limbs. I fear that noise. Dread it. Hope to never hear it again.
Still laying down, I looked to my right. He was wobbling at the hips; spurting and thrusting like a drunken zombie.
“My legs hurt,” he said. “I’m having trouble walking.”
* * *
For any survivor, or the family of a survivor of Guillain-Barre, those words set off a chain reactions of emotions; and the demand for an immediate course of action.
I knew he wasn’t faking it. You can’t fake that kind of pain, that kind of movement.
In fact, as I sit here typing, he’s laid out on the couch, legs up, still pretty much unable to walk without a tremendous amount of pain. It’s still insanely scary to watch. I just want to scream, or cry, or – I don’t know what – run down a hall? Run away from it like a monster in a horror movie and run into somebody’s arms that makes me safe. Make it all go away.
But life isn’t like that. You’ve got put those feelings aside and go step-by-step towards where you need to go. In our case, that was the hospital. Immediately.
Upon accepting this, my mind becomes a checklist. Get dressed, give them food (even scared, sick kids have to eat), pull together stuff to pass the time [iPod, coloring books], stop to think “man I’m glad I set the coffeemaker on timer last night – coffee, woo hoo!”, call Heidi, call the grandparents, get to the hospital.
We went to the hospital. They admitted us.
* * *
The nice thing about Beckett’s extensive history; and using the same hospital, is that medical professionals typically don’t F around when they see Beck.
The listen. They take his symptoms seriously. Beckett’s ER doctor did all the right things; checked him for limb strength in the extremities, ran some reflex tests, asked me questions.
Admittedly, after we got to the hospital and I spent some time with Beckett, I noticed conditions that were not consistent with Guillain-Barre. He exhibited strength in his toes and feet; there was no tingling present, and he was exhibiting full range of motion in his extremities, too. The doctor saw the same things – all encouraging signs.
“If it wasn’t for his history,” the doctor said. “I would tell you what your seeing is fairly normal with the flu.”
* * *
They moved us to pediatric ER any way. They drew blood.
And then we waited.
When the doctor finally came back, he said both he and Beckett’s pediatric neurologist were encouraged by the results. The blood work indicated elevated levels of markers associated with muscle inflammation and none of the markers associated with GBS.
“We both feel comfortable with these results,” the doc said. “This is good news.”
The story goes that it’s fairly common for boys Beckett’s age to get this kind of reaction from the flu or other viral infection. The condition goes by several names – but Beckett’s symptoms most resemble something known as benign acute childhood myositis, a type of myalgia.
The symptoms are supposed to go away in a few days. If anything changes for the worst, we’re to call the doctor or make an appointment with the pediatric neurologist.
And that’s where we sit now. In a waiting period.
* * *
As an aside, I have to say that I’m sorry for putting this morning such an immediate fear in those of you who follow me on Facebook. My first reaction is always to communicate with the people I care about.
But maybe the reaction was a little bit selfish, too. I think I needed – or at the very least, wanted – your prayers. It gives me strength and keeps me upright, knowing the so many of you care about me, Heidi, Beckett and Brody.
I often feel in your debt; like there is no way I can repay the love you all provide.
I’m tired this afternoon. Drained and tired. The adrenaline rush has subsided. Heidi just walked in the door, back from her trip to the Los Angeles area.
I need to rest; curl up on the couch and rest.
Maybe I need some bacon. And candy. It always seems to work for Beckett.
With love, Ed
Update: In the half-hour since I wrote this, Beckett is up and moving around a lot more. I apologize for the scare this morning.