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Sparking Coals

Leo has been in the hospital since Friday night when he was admitted with a fever of 102 and in status epilepticus, which for those of you like me, means, a big boss daddy seizure from hell. It just wouldn't let go of our little man. It kept him in its merciless grip for almost three hours while the ER docs tried one medicine after another with no effect. Finally, right before they were going to intubate him so that they could unleash a med of atomic proportions, his seizure finally gave up and slunk away. Needless to say, it was a nightmare of warlike proportions for all of us. Because of the arsenal of meds that were injected into Leo, he was drugged up and out to his eyeballs. He slept through an MRI, Xray and many other tests that night, which was definitely a blessing. He was hooked up to an EEG with a video monitor and they hopefully will disconnect him this morning. The EEG showed that even as he was sleeping, his brain was nursing a corner of seizure activity in his occipital lobe. There is no way to find out how long that hot coal of wretchedness has been lurking in his brain. Apparently, when flaring, it causes loss of vision. We are particularly worried about this bit, and its hard not to despair. However, Leo's neuro is a very sharp man who likes to think out of the box, and isn't afraid to do more for his patients then just treat the symptoms. He promised to delve deeper into the mystery that is Leo to try to find the underlining cause for all his problems; the what, where and how. We are very excited about this! Nobody has ever offered to do this for us.
He has put Leo on a new medicine in addition to his Keppra, which has been upped to the max for his weight. It is called Depacon, and though it isn't as harmless as Keppra, at this point, we need to take drastic measures to kill the seizures in his brain.
I'm heading back to the PICU now to relieve Justin who has been there all last night, but I just wanted to let you all know what has been going down with our little lion man. Thank you for all your prayers and love, we certainly need them as we navigate these stormy and uncertain seas.


Before the seizure happy as can be....

After the seizure, hung over and very very sad.

Not quite as happy as can be, but getting better! Still not having the energy to sit up.

Comments

  1. Lord have mercy. We're praying. (((hugs)))

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  2. I'm praying, praying for you all.

    Sincerely,
    Mary Tickel

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  3. Lord, have mercy. Keeping all of you in our hearts and prayers.

    ReplyDelete
  4. Prayers from me too. God bless the little lion and grant wisdom to his doctors....

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  5. Our small prayer group continues to hold Leo in our prayers.....always have, Always will. love, Claire

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  6. God be with ALL of you in these very hard times. +++

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  7. Prayers.

    God is love (John's first epistle)

    ReplyDelete
  8. Lord have mercy. I'll pray for you.. My heart sank when I saw the post.:((

    ReplyDelete

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