Samsmom: Life, Joy, Loss and Loving your Mitochondria

24 Hours

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It has been quite a 24 hours……

We have been struggling with seizure control for the last ten days. Samantha would have a cluster of seizures, we would give her rescue meds, she would sleep for a day or two and then the seizures would come back.

This is no fun for anyone.

So yesterday when the seizures started up again, our neuro and I decided we would take her to the Emergency Room, give her a hefty dose of Dilantin, stop the seizures and go home on a new seizure protocol.

That was the plan.

It was a good plan and it involved us only being at Children’s in the afternoon while we did the I.V. med.

But Samantha’s seizures had a different idea and by 8:00 last night it was clear we wouldn’t be going home. When the seizures continued after two doses of Dilantin, two of Ativan and an EEG, it was clear we would spending the night in the PICU.

So, we hunkered down for the night and I prepared myself for another weekend at Children’s.

BUT, today the seizure activity has calmed down, her heart rate and oxygen levels have remained stable and our trusting neurologist has decided that the best place for Samantha to be is home.

So, we are going home! We have never been discharged directly from the ICU but I am not arguing. We are packing up, tip-toeing out of here and keeping our fingers crossed for a quiet, non-eventful weekend.

Hope you have the same 🙂

5 responses to “24 Hours”

  1. Maria Hopfgarten Avatar
    Maria Hopfgarten

    So hoping you get a quiet weekend! You so need it! We get discharged from the PICU when Jacob is in with oculogyrical crises. The PICU nurses don't always know what to do when we're ready to leave, and Jacob is accessed, so it's definitely not the norm!We need to catch up – we have also had quite a 2 weeks with oculogyrical crises and issues with Jacob's seizure meds, on the phone with Abbie every day to every second day – but so far no admission.Thinking of you, my friend.Love, Maria.

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  2. Deana Avatar
    Deana

    I'm afraid we may be trading off…fingers crossed that we're going to get to leave after seeing Dr. P.He's been throwing up, and not keeping his seizure meds in, and cried from 4:00pm-2:00am yesterday. UGH! Just UGH!!!!!!I hope you get out of there, and have a calm weekend!

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  3. Misty Avatar
    Misty

    Praying that her seizures stay under control… we have had recent experience with my little guy having them… so far he has been fine on Keppra, but we are tapering off to see what will happen. I have a feeling that he will need meds for life…. but I have hope. I hope to be more involved with blogging and reading my favorite blogs! sending prayers for Samantha!

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  4. Anonymous Avatar
    Anonymous

    Big, lush BC style hugs and love to all three of you…xoxTnT

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  5. Amanda Avatar
    Amanda

    Shit girl – I need to get some vodoo magic whipped up for the little Sammer bug so you guys can catch a break. Hang tight and let me know if there is anything I can assist you with. Hoping you can make the meeting Tuesday night and that we can make Sunday happen.XO's

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Hello,

I’m Heather

Welcome to Samsmom and over 15 years of stories about love, loss, grief and the process of moving forward. It’s not always pretty here, but it’s honest. I’m a writer, a fund raiser, rare disease advocate, Mom of two Littles who are no longer here, Wife of Hubs, Aunt to the Phews, daughter, friend and unapologetically me.

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