Monday, August 8, 2011

Vomit, Vimpat, VNS, and some ridiculously long sentences

Today started so serenely with Izzy waking me up by softly stroking my face, a gentle caress is the first step in her usual action plan to get me out of bed and guide me towards her feeding pump. If I don't respond to her tender touches, she switches to slightly stronger strokes, then to patting, then to smacking, and if all fails, she resorts to forceful kicks, strategically aimed at my head. Since I fed the Bean at midnight, her hunger wasn't raging enough to throw a roundhouse kick to my face, rather, she used her dimply smile to charm me out of bed. 

She sounded really stuffy and junky, so Phil suctioned her while I was mustering the strength to get up, and I was still in the process of mustering when Phil returned her in a slightly grumpier mood and laid her down next to me on our bed. I was just about to snuggle up to her when she coughed one of her signature smoker coughs and hence threw up a big blob of snotty guck, nailing the pillows, herself et moi. 

I quickly cleaned up the yuck, washed down the Bean, vented a boatload of mucus and air out of her tummy, and then, as if nothing had happened, bravely went on feeding her. While I knew it was a distinct possibility, for some reason I was surprised by the sudden eruption of projectile vomiting, which by the way I caught with remarkable dexterity. I muttered some obscenities reserved specifically for mucus-related incidents, while I repeated the cleaning-up-washing-down-venting-out process with an additional nebulizer treatment. Because I don't give up easily, I resumed feeding the Bean on the couch holding her, and I utterly ignored the possibility that we might be at the beginning of a cyclical vomiting episode. I don't know if it was the God of cyclical vomiters who had mercy on us, or if it was the effect of the Cyproheptadine that prevented the onset of the vomiting cycle, but I was grateful nonetheless. 

After our rudely interrupted feeding time, I called Izzy's neurologist to discuss Saturday night's awful grand mal episode, but Dr. L apparently doesn't time his vacations around the Bean's potential neurological events. The receptionist kindly suggested that I could talk to the nurse, which I didn't really think would do much, but still sounded better than just hanging up without talking to anyone. 

The nurse patiently listened to my overly detailed account of the Episode and then kindly laughed at me when I told her that I was decreasing the Vimpat because I was afraid that I had increased it too much and it might be making matters worse. "The Vimpat is not going to cause seizures, it is for seizures" she said chuckling, and I wondered if my accent makes me sound stupid. 

I really wanted to tell her that 'seizure' is actually listed as a side effect on some seizure medications and that the Vimpat is causing severe gassiness and tummy aches and frantic restlessness and OCD type of behavior in my daughter, which puts stress on her body and consequently can worsen her seizures, but I bit my tongue. I also wanted to tell her that my friend Elizabeth told me that the increased dose of the Vimpat might be counterproductive and worsen Izzy's condition, so it must be true because she knows a few things about the godforsaken seizures, considering that she has been dealing with them every stinking day for over a decade and a half, so there. But I didn't want to sound 12. However, when the nurse called me back later to inform me that she had consulted another neurologist at the office and his instruction was to decrease the Vimpat to the original dose, I couldn't resist but ask her what the doctor's reasoning was and thus made her say that the increased dose might be making matters worse. It was very petty of me, but at least I refrained from saying 'I told you so'. 

When Dr. L returns from his vacation, we will discuss what needs to be done to proceed with the VNS. 


10 comments:

Claire said...

Stupid, effing nurses!! Works for a neurologist but doesn't know most seizure meds have seizure as a side-effect...it's like meds 101...ugh. Well...ummm...at least Izzy isn't vomiting? Yeah...not much to offer but more expletives.

Elizabeth said...

I'm not going to say it.

Single Dad / Disabled Daughter said...

Well I'll say it.

See, Erika, I told you so. I told you it was not a good idea for me to keep you in my prayers. Doesn't work for me neither.

Was she a school nurse?

mhk said...

Izzy is such a cutie! I hope this 'extreme' amount of work settles down as she gets older. The seizures are usually much less frequent as they enter adolescence/ adulthood.

Kim Ayres said...

Have you been watching too many Chuck Norris films with Izzy? ;)

Beate said...

How come a nurse working for a neurolist is so little informed about the side effects of seizure medication???

You are a very polite person, I guess I would have told her what you bit your tongue for!

Jenn said...

i would have said something like . . . "it seems to me that I mentioned this while we were talking on the phone before and you condescendingly chuckled at me." ok you know me well enough to know, i'm talking out of my butt and you know i'm all talk anyway! but i'm kind of glad she had to call you back and was wrong! i'm still praying.

A said...

Some educational form of "I told you so"--- perhaps, "Thank you for confirming what I already suspected" would have been so totally appropriate; a great kindness, actually. You could hold your nose while saying it. So what if it made your voice sound funny. Might help her retain the information. And just to keep it real, maybe a f*** you in Hungarian before saying goodby.

Falak said...

No wonder most people are skeptical about medical professionals and their competency. Thank God the nurse had the sense to check with another doctor. Hope Izzy and you are both doing better now. Take care.

Beate said...

How are you and Izzy doing, Erika? *hugs*

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