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.
9 comments:
Docs should NEVER doubt mommy intuition!
I think you are one of the smartest mommies I know!! If those doctors knew what was good for them, they would listen and follow up with that idea.....
It certainly is an interesting theory and I do hope they take you seriously. (they probably just wish they would have thought of it themselves!!!!)
And for that so called "neurology nurse".....WHAT the HECK??? She apparently needs to spend a little more time learning about what she deals with every day.....
hang in there girl...and teach them all something while you are there!!!!!
Sophie had issues with vomiting post-op. Sophie had issues with getting her Dilantin and Depakote levels post-op. That is why we didn't leave until Sunday (Day 9 post-op). Once we hit that 24 hour mark of no vomiting, we were out of there. Afraid she was going to vomit again. But we just HAD to get out of there. I am sure you know why. I knew I had a great hospital (along with a team of neuros that knew her case) back home to rely on if we needed it.
Not that I am trying to tell you to do anything. This is just our story. And I am just hoping that things turn around for Trevy so you all can get out of there soon but when the time is right. Which probably felt like ages ago.
By the way, NOTHING is a fairy tale in the seizure world!!!
Jen...and they do!!!!
Marcia...the same RN said that parents need to be careful about doing their own research online...because they learn things that aren't true! I was SO shocked AND outraged that I couldn't even respond. While it's true there are some crazies out there...most of us are level headed INTELLIGENT caregivers swapping stories and comparing notes to best advocate for our kids. We're the ones plugged in 24/7 to our children...and their life with seizures. She's lucky I didn't blacken her nose this morning.
Elaine...I DO know! I keep assuring them we have a FAB children's hospital back hooooome! Honestly...if it weren't for that pesky seizure last night I would just dismiss his vomiting as a random getting over brain surgery issue. But the behaviours he had pre-seizure yesterday are very similiar to how he was acting before each time he got sick. It was just "weird" and irritable. We just chalked it up to his tummy was getting upset. But now...we're pretty convinced there was some sort of "seizure" activity going on. Especially since the Dilantin levels have been up...we've had NO vomit...and NO weird behaviors. All that said...our home neurologist can handle seizures with us!!! They aren't discharging us now until at least Tuesday...because he's not even at therapuetic dose of Trileptal until tomorrow. And they want to make sure he keeps it down before pulling the IV. Uuuuuugh. Like I said...if it weren't for that pesky seizure! btw...any EEG info?!?!
xoxo everybody
...danielle
Sure, just like teething doesn't cause fevers and pooping issues. Seriously, you'd think they'd know better by now. Mom's totally know their kid. At a minimum, they should give a contemplative look and say they'll consider it.
Good luck with the Trileptal, btw. That stuff put Emma into such a lethargic state, we took her off of it before we hit therapueic levels.
10 months of post-ictal vomiting experience tells me that there is a nurse out there that needs to spend a little time on the Internet. Perhaps she could ring my daughters pediatrician who spent that time in a state of denial.
Danielle...YOU GO GIRL!!!! Mommies know so much about their kiddos and doctors and nurses know it but do not want to admit it. Yep, there are the crazies, but give me a break...I will bet you anything after they've had time to think about it, lay out the time-line just as you have in your blog, they are thinking the same thing (your right...you will not be told - MOMMY GOT IT). I don't know why sometimes they have such a hard time giving moms the credit (and dads too sometimes) they deserve. Who do they get the history from??? Who do they come to with questions...especially when he did have his seizure...to describe it so perfectly!!! They just don't like it when you figure out something before they do....and you caught them way off guard...I just hate it for the kids who do not have parents like you who will STAND UP and FIGHT for their kids!!! TREVY is so proud of you :) I love his hair trim and his smile for GRAMS, I know that melted her heart, as well as yours and everyone who saw it here. Your becoming stronger by the day...Praying your there no longer than you need to be for everything to be figured out and a safe trip home with a healthy Trevy!!!!
I wonder if any doctors will ever start listening to mom's. Don't they realize that we know our children best and know when things aren't quite right!? Sheesh...
But, you had me laughing out loud with the "And can cuss you out in Swahili." comment! You'll have to teach me a few of those words D so I can use them on hubby and have him completely unaware. *grin* BTW...do Toby and Bri speak Swahili at all?
I know you've reminded me many times that we are the only voice our kids have. Not that you need a reminder, because Trevy's voice seems to be loud and clear! I'm so proud of you for throwing it out there no matter what kind of response you may receive.
We may not wear the white coats or have a fancy medical degree hanging on our walls, but we are the "filters" and inevitably their first "doctors". It's our job to distinguish what issues could be relevant/not relevant, coincidental, or connected. No amount of medical training can surpass a mommy's eye...or gut. You never know when there might be the zebra lurking. I look at it like, the odds of the zebra are small...but then again the odds of having infantile spasms were low too. You never know.
I'm so hoping you guys get on the road home soon...
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