Saturday, February 16, 2013

What a Week

Oh, what a week. Am I still standing? Walking? Barely. I just popped an anxiety pill. I hope it works.

My wonderful parents have been with us since last Sunday. They canceled a long overdue and much deserved vacation in Florida because Benjy was sick and going in the hospital and they felt their place was with him and us.

They NEVER fail to be there for us when we need them. Just like they did not fail my sister and her family over those long four years she fought the cancer that finally killed her. They made that nine-hour drive to Cleveland again and again and again, and in the end my mother just lived there while my dad had to stay home in New York and work. The guilt over that almost destroyed him, but he had to do it.

So they have been here and are planning to go home today until Tuesday. Then they will return in time for Benjy's new MRI, performed under general anesthesia. I feel rather like I did when they left us a week after Saskia was born. I stood in our driveway holding my little bundle and weeping, arm outstretched toward their rolling car. How on earth was I going to bathe and feed that tiny girl, and find the right clothes to dress her in, and soothe her colic, without my mom to help me?

So, it has taken a BLOODY WEEK to get this MRI scheduled. And in the meantime all of Ben's concerning neurological symptoms continue, and maybe worsen. Plus, what they call "absence" seizures have now been noticed, by me and his teacher and his therapeutic mentor. Those are the ones where the person checks out for a few seconds and then magically reanimates. I am scared to death he's going to do that on the stairs and break his neck. Oh, and did I mention the personality changes? Yeah, those too.

Yet, this is not a case where they would look at a child and say, "Off to the Operating Room, NOW!" Are they concerned? Yeah. But we seem to have a little time to sort things out. On;y taking a little time is KILLING my whole family.

The MRI would have been done by now except for some madness involving a sleep study that was done a month ago to rule out apnea. His neurologist was not TOO concerned but checking it out made sense. So Ben and I spent the night at the Massachusetts Eye and Ear Infirmary, across the street from Mass General, and he was all wired up and slept just fine, and at eight in the morning the technician let us go and said the doctor would receive the results in two weeks.

Fast forward to this week. Anesthesiology tells me the imaging cannot be performed until those results are received. Hmm, I think. I guess they never sent them to the neurologist. So I call Mass Eye and Ear and ask for the sleep clinic. At which point I learn two things: the hospital contracted with a company called Sleep Health Centers for its sleep studies, and that Sleep Health Centers (which I learned when forwarded to their line) had abruptly closed up shop ("due to problems beyond their control").


Thus began a week of emails and phone calls and frantic searching for those results -- on my part and the part of many others at Mass General. Really, on the first day, when the anesthesiology nurse told me SHE was told there WERE no records -- either they never existed or did not exist now -- I felt this was a Quixotic search. I mean, REALLY?

"Let's just move ahead," I urged her. "How about I bring him in to MGH tonight for a sleep study and then you do the MRI tomorrow?"

No dice. They were gonna find those results if it killed them. But of course, they didn't. Meantime I called in the big gun -- aka my brother-in-law Mike, who is a bankruptcy attorney.

"Mike," I said, trying to hide my UTTER DESPERATION. "What the hell is going on here? Could these records exist? Could they have disposed of everything whrn they knew they were going under?"

Mike looked into it. Found out the name of the court-appointed receiver and and shot him an email on his "client" Benjy's behalf. (I thought that was kind of funny. His client.) But he said, "Don't hold your breath. I doubt he'll write back. And of course so far he hasn't.

Now, try to imagine being the mother of a kid who has always been disabled and is progressively declining in some scary, scary ways. Who knows the doctors need to rule out some really frightening things, including but not limited to a tumor or other structural problem with the brain, some sort of inflammatory process, a degenerative disease. (On the other hand this may all be attributable to a simple seizure disorder and easily treatable with meds. We just don't know yet.)

And imagine you love this kid with the heat of a thousand suns.

And imagine you have to wait. And wait. And wait. For answers. For comfort and relief.

And meantime, your kid's having bad days and slightly less bad days. (I hear he tossed a football at school yesterday. Yay! But last night he totally went off the rails. Boo!)

Well, the good new is, he is having his MRI on Wednesday of school vacation. FINALLY. And his neuropsychological testing the day before. And a psychiatry appointment on the following Friday.

Yeah, it's gonna be a great February break for Ben.

The following week he gets to endure a 72-hour EEG. I am not making this up. We'll go to this place and they'll wire up his head and wrap it in gauze and and send us back home and for the following three days I will try DESPERATELY to keep him from feeling like he is going to die because he is bored. I will probably be forced to buy a new video game every hour on the hour.

But maybe at the end of it all we will have some answers.

There is just one thing that terrifies me. (Well, far more than one thing. But right now.) And that is that he broke down last night, with that growing  restlessness, that desperate seeking (more video games! Please! Can't you just help me??) And the tears, and the thrashing, and the utter, utter despair.

I guess I can be thankful it wasn't an animal taht would save him this time.

I prayed for his meds to kick in and put him to sleep. They did, pretty soon after. Then I went downstairs and did something I have not had to do for over a year. I hid the knives. I just had this creeping dread he might get up while I was asleep and look for them. It was probably an irrational fear. He has not wanted to end his life, or asked me to do it, for more than a year now. But last night I got spooked.

Before I went to bed I asked the Hellacious Hound if he would kindly sleep outside Benjy's door. Just watch over him while he slept. And when I woke up early this morning, my roiling stomach preventing the sleep I'd hoped for, there he was, right outside Benjy's room, a fluffy sentry. Noble hound! You will receive a bounty of cookies today.

So now the question is: what will happen when Ben wakes up? And if what began slowly emerging this week and culminated in that breakdown last night continues today, my big question is: whom do I call for help, neurology or psychiatry?

Because this case is confusing the crap out of me. What everyone thought was psychiatric might be neurologic. Or a combination of both, more likely. So how am I to know what to do?

 Fortunately I have doctor friends who can help me make that decision. All I can really do now is hope we make it through today, and tomorrow, and so on through the end of all these tests. And take as much of my anxiety meds as I can without sleeping through the whole damn week. (Which is really what I would prefer to do.)

And reprise my old mantra, with which I used to close every post when I first started this blog:

Tomorrow is a another day. We'll see what it brings.


  1. 72 hour EEG. Are you effing kidding me? I had to do a 24 hour blood pressure monitoring test and around hour 18 I ripped everything off and said, "Screw this, I think we're all pretty sure the preeclampsia just NEVER WENT AWAY." And it didn't. I have high blood pressure to this day and it sucks but what can you do? That and sticky blood give me all the room I need to bitch at people who think I should have a second child.

    Poor Benjy. Big hugs to you all. And two months of normalcy. I...have prayed (in my atheist way) for exactly the same thing.

    1. Atty, ha! You pray the way I do: the atheist way. In my case, the Jewish-atheist way. But I guess it is still a prayer -- sometimes to myself, to dig deeper for those inner resources that keep me (and us) afloat. And sometimes to the universe. Or something like that.

      I am not kidding about the 72-hour EEG. Those will be three nightmarish days. I can imagine your experience with blood-pressure monitoring was pretty sucky, and I can just hear you saying F-this and diagnosing yourself! Because I have done the same thing, when doctors have not been able or ready to make the call. They do, later, and I have the satisfaction of a silent "I told you so," and the perhaps slightly more malignant satisfaction of thinking, "if you don't listen to me next time and catastrophe results I will sue your ass off."

      Actually I am the least litigious person in the world, and I love all our family's doctors, but still. When Saskia had pneumonia and mono simultaneously a couple of years ago and I told he doctor I thought just that (I mean, she was crashing into the lockers at school), her doc kept telling me it couldn't be. She did diagnose the pneumonia a week or two later but the mono she denied until it was over and she found the antibodies in Saskia's blood. That kid should have been out of school for six weeks but instead I had to send her most days because we did not have a medical excuse to keep her out.

      In Ben's case I trust everyone so far. But am quickly becoming an expert in seizure disorders. I really think I should just go to medical school -- or straight to residency. I have several areas of specialization already. ;) Except with a sick kid, who could possibly go to med school? Or work?

      Thanks for your hugs. Right back at you! Here's to "normalcy" for us all! And good health to you, for sure!