Tuesday, July 26, 2016

Seizures and Sass....

Sigh.

Tess's seizures are back; with a vengeance.

I'm trying not to get all overwhelmed and freaked out by them but we've had to use rescue meds four times this month and almost had to double down on them a couple of times because her seizures weren't stopping with the first round of the rescue meds.

I mean, I hate to sound whiny but COME ON! (said in my very most whiny voice)

The longest one was twelve minutes and last night's was nine and was a type I had never seen before. Well yeehaw, cowboy.

 Tess's average "bad" seizure lasts around three to four minutes but every ten days or so, she throws us a curveball and doesn't stop until rescue meds are given and even then, continues to seize for a few minutes after. Other times she'll stop her tonic clonic seizure at around 3 to 5 minutes but then cluster into tiny focal/absent ones. That can last twenty minutes or more. And those are super special because it's so hard to tell if it's seizures or just her postictal phase so I'm questioning and doubting myself about whether or not she really needs the rescue meds because WHAT IF she's not still seizing?

Side note: when I called her pediatrician in the middle of one of these events and he left a patient to come talk to me on the phone (even though I told his nurse to just give him a message), he immediately told me to give the rescue meds and to stop doubting myself. "You know her better than anyone, Mama Reidy. If your instincts are telling you she needs the rescue meds, as her doctor, I'm telling you to listen to those instincts and GIVE THEM." Yup, he's a good guy.

While the seizure is rolling through her little body like an earthquake, I hover helplessly over her, rubbing her arm and telling her that, "Mama's right here. You're okay, it'll be over soon.",  and praying that I'm right. I hook up her o2/heart monitor and watch the numbers. Willing the heart rate to come down and the oxygen to stay up. When they do come to an end, she lets out a big, shaky sigh. Catching her breath, I think. Then she'll sort of look around like, "What's going on?". Sometimes she laughs at me because I am so close (all up in her grill so to speak) and calling her name, and she is finally hearing me and thinks it's great fun. Other times the "earthquake" has left her shattered. Completely wiped out and so she'll sleep for a few hours.

For my part, once the seizure is over, I sit right next to her, monitor her oxygen, heart rate and respirations, and watch for her to wake up and seem more like herself as the word SUDEP! SUDEP! SUDEP! races through my brain like some sort of psychotic mantra. I wish I had never heard of SUDEP. Before I knew about it I could at least feel like once the seizure was over, the real danger had passed. Now I know different and the real danger could happen hours later.

Double sigh.

Many calls to her local doc as well as her doc in Boston have been made over the past three weeks. She's had blood draws to check med levels and then med increases that haven't touched the seizures.  I expect more med increases or a whole new med will be added to her daily regimen when I hear back again from her doc in Boston.

In the midst of all of this, there has been some fun, and funny stuff going on.

We've been trying to get in some "talker" time on her good days. In fact, just the other day my little queen was using her talker and I was jabbering back answers and was starting to ask her a question when I heard,

"Be quiet."

Um what the what?! Had my little angel just told me to be quiet?!

I wondered if maybe she didn't mean to "say" that and her eyes had landed on the wrong picture on her talker...you know, by accident, because she is still learning where the words and phrases are.  So I started to ask her the same question again because I assumed that my precious sweet little princess would never want to tell her most beloved mama to be quiet!  Well, you know the old saying about assuming things, right? Yeah.

"Be quiet."

Okay, now I knew she was for serious and I was really quite offended! In the words's of Stephanie Tanner, HOW RUDE!

I proceeded to tell Tess that telling someone to be quiet when they were asking you a question was not nice. It was rude and could hurt people's feelings.

"I love you."

Yup, the little stinker could tell I was not happy with her and decided to sweeten me up in a way that she knew would melt my mama's heart.

I immediately stopped my lecture and jumped up, wrapped her in a big hug and said, "I love you too!!!" (I was so happy she had told me she loved me that it was almost pathetic. Almost.)

Tess's response?

"Be quiet!"

Me: "TESSIE!!"

Tess: "I love you!"

Me: "I love you too!" (officially pathetic now)

Tess: "Be quiet!"

Seriously, I don't know where this kid gets her attitude from!

Must be her dad. ;)



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