Sometimes I hate being The Mom. If I could turn back time...I would totally be wearing a white coat by this point in my life. To prevent the raised speculative eyebrow look from the white coats. And they would be forced to put some weight in my mommy-sense because I had the white coat to back it.
But alas...I swear they think I'm not just The Mom...but worse. The Crazy Mom. Because I dare to question the possibility that the random throwing up might be more than random. That it might be seizure related.
Sure...sure...I know throwing up seizures are rare. But post ictal throwing up isn't. Although I was informed (with a straight face no less) by Nurse Neuro-Surge today that post-ictal vomiting is a fairy tale. Jonathan swears the steam from my ears was visible as I in no uncertain terms told her to educate herself more fully before spouting off. Particularly to a mother who just chose to have half her son's brain removed. And can cuss you out in Swahili.
Sure...sure...don't look for the zebra. Unless you're in the freaking Serengeti!
And that's my point. What if... Cause let's face it. Neurologists could easily be titled Guessologists. And to seizure parents it would mean essentially the same thing.
Here are the facts (as I...the white coatless mom...see them):
Trevor had TWO outstanding days last week! To the point that Dr. Rockstar was bragging we'd be home before he returned from his pedi-neuro conference. Trev was doing that good. That would be the day I snapped the smiling pics.
Tuesday evening suddenly we're in a tailspin. Barfing his brains (like the surgery mom pun?) out. Miserable. Happy kid vanished.
Wednesday his Dilantin levels are low end. Seems to me Dilantin is a tuffy to keep therapeutic. No longer vomiting excessively...just random. No pattern.
Thursday and Friday...for some reason no Dilantin levels are drawn. We continue to have random vomiting.
Labs are drawn to test for everything under the sun (except Dilantin) that could cause vomiting. All are negative.
CT scan is imaged to get an idea if pressure could be the problem. No. It's clean.
Saturday Dilantin levels are finally drawn. Surprise they are SO low it's like he's not covered at all. Booster is given. Levels are rechecked...and he's now therapeutic.
Coincidentally (or not) as the booster is being IV-ed into his blood stream (before it could possibly take effect) Trevor has a tonic seizure. The first seizure we have seen since last Saturday. A whole week. I'm leery of Saturdays now.
Immediately post tonic seizure Trevor retches. Which caused the light bulb to switch in my head...and suddenly I'm seeing it. The pattern. The zebra.
Low levels of Dilantin...random unexplainable vomiting...and now a visible seizure immediately punctuated by spewing of chunks...
Which leads me to ask...
What if all this time...the vomiting has been seizure related? Which is connected to Trevor not being at a therapuetic dose of Dilantin. And not necessarily A seizure. But seizure related...ie. post-ictal?
And all the Guessologists gasp...
...but cannot dispute that The Mom may be right.
The trouble with most (or is it all? I forget?) things neurological is that only time will tell. Barf free time. Barf free...therapeutic Dilantin time. We've crossed the 24 hours vomit free threshold. The longest stretch in days. Each hurlie-free minute that ticks by brings us once minute closer to discovering...
if The Mom may be right after all.
Not that the Guessologists will ever tell.