Skip to main content

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. Matushka AnnaAugust 5, 2012 at 9:25 AM

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

    ReplyDelete
  2. AnonymousAugust 5, 2012 at 12:34 PM

    I'm praying, praying for you all.

    Sincerely,
    Mary Tickel

    ReplyDelete
  3. AnonymousAugust 5, 2012 at 2:41 PM

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

    ReplyDelete
  4. Elizabeth @ The Garden WindowAugust 5, 2012 at 4:00 PM

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

    ReplyDelete
  5. AnonymousAugust 5, 2012 at 8:36 PM

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

    ReplyDelete
  6. AnonymousAugust 5, 2012 at 9:42 PM

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

    ReplyDelete
  7. Janelle thegeekywifeAugust 6, 2012 at 1:17 AM

    Prayers.

    God is love (John's first epistle)

    ReplyDelete
  8. AdrianaBAugust 6, 2012 at 4:51 PM

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

    ReplyDelete

Post a Comment

Popular posts from this blog

With Mixed Feelings

So for the past couple weeks my feed has been filled with the "back to school" and "end of summer" and "beginning of parental freedom from their annoying offspring" photos. It's ok, I totally get it. Another year, another back to school pic, another notch in the door jamb, and another chapter of growth and development with junior. Look at him go! Or not, as the case may be for many children. According to the CDC (Centers for Disease control and Prevention) one in six children has one...a developmental disability. A stamp of "not normal" across their foreheads. A number. A check mark in a box. My kid is one of them. I heard a brief segment on NPR that enticingly started out with the title of developmental delays on the rise, a 17% increase over the last twelve years. And though I turned up the volume the segment only talked about how it's probably only due to poverty, and it's only the upper classes that actually pursue diagnosis...
34 comments
Read more

Pharmaceutical Fallout

"Back to the hospital?! You're joking right?!" I'm sure you guys are wondering what's been up with the Lion this past week after our worrisome VEEG adventure.  To tell you the truth, I feel like I've been taking shots of Leo's drugs and consequently feel dull and numb and just plain depressed. That is now of course, two days ago I was running high on adrenalin and resembled a charging rhino. I'll tell you why: So after being put on his new drug, Trileptal, Leo definitely started having a cessation of seizure activity, unfortunately however, he also started having severe headaches, photophobia, inconsolable crying and then in the last couple of days, a rash on his thighs, face, and hands. Just as an FYI the word "rash" is a magic word that will open the doors of the medical castle faster and slicker than a trojan horse. It's true, one does not mess about with allergic reactions. Day 1 Day 2 (rash got progressively ang...
2 comments
Read more

The School Bus As Metaphor

A school bus can mean all sorts of different things: dread, boredom, excitement, responsibility, change...it means something different to all of us. I was primarily homeschooled as a kid, and though I preferred that, there was still an element of desire and curiosity for me every time I saw a school bus when I was young.  I couldn't help but wonder what it would have been like to be part of the school bus world. Of course I didn't have to wonder about it for very long because I did, in many ways, have the ideal education. There was that time I took the winter off from school instead of summer to practice my extra curricular work which was...downhill skiing and snowboarding. Then there was the part-time jobs at the local farms that I was able to do because of my own set and very flexible school hours. To clarify, because it sounds like I didn't do any academics at all in the above two sentences, I did. Lots. Tons. But I did them efficiently and completely independently, e...
Post a Comment
Read more