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Smooth Away The Lines

I realized that there are two places in my body where all the stress and tension gathers: in my shoulders and in that spot between the eyebrows. When Leo was being carted around the hospital from test to test, and as I numbly watched my reflection march next to his moving crib in the black mirrors of the hospital windows, I noted that my shoulders looked like they had sprouted from my ears. I literally could not relax them down, not an inch, not a centimeter. That night there were red marks on my neck from the collar of my shirt. I don't remember being so scared, so panicked, so exquisitely helpless as that night when I sat in the empty ER triage room holding my shaking baby for what seemed like hours. Was in fact, hours, before the right combination of medications was introduced into his over loading system. I'm ashamed for my treatment of the ED staff that night, it wasn't their fault that the regular seizure protocol was not working for Leo. It was, however, their fault for leaving me alone in that room, for their blank looks in response to my frantic questions, for missing little man's veins, when accuracy and speed was the most important. I know I'm looking for someone to blame, which is probably normal in such a case as this, where there really isn't anything clear cut, or black and white - when you are dealing with a mystery that is the brain. But shouldn't SOMEONE KNOW? Can't someone tell me why, and what this means for my little man's future? For our future?
There are no answers. Only my scared reflection looking back at me with furrowed brows. Can I ever un-crease my forehead? Not only do I now have strands of white hair in the black, but the groove between my eyes can be measured to the amount of stress my eyes have witnessed.

Yesterday afternoon they let us take Leo home, after a weekend in the PICU. He was, in the fullest sense, in a truly pitiful state. When he was conscious, he was screaming, crying and pulling out his tubes and plugs, and when he was sleeping, his brain was still spiking seizures. That is why they kept him for several nights hooked up to the EEG, so that they could see which medicine actually managed to suppress the electrical activity. Apparently the Depakote worked the best, so that is the one they sent us home with.

I know when Leo was born we were preparing ourselves for life with a baby who could function only on a very basic level, but somehow, miraculously, that was not in the cards for us. Leo, for the past year has been always very energetic, physical, and animated. Just like any other two year old. So all that preparedness from before, was all forgotten and buried under the many new happy experiences and milestones that Leo has reached. So when his doctor said that he may never achieve that same strength and dexterity in his left side, it was a very hard blow to take. Just one blow on top of the all around beating that our little family has been subjected to this past several days. One gets to the point where it stops hurting and just feels like pressure. For me, this pressure was focused like a bulls eye on that spot between my eyebrows. Today, it almost felt like the pinpoint from a magnifying glass; flaring and burning away until nothing was left. Yeah, can you tell I don't do well with seizures? Anyway, I was sitting outside in the sunshine with Leo's limp little body in my lap, when I had this thought, almost as if the passing wind (or guardian angel) had whispered in my ear. It was about Leo's shunt, and how usually it requires immediate reprogramming after an MRI, and how I realized that they never did that. That we were going on day four and Leo's shunt settings could be totally whacked out. Within the hour I had him back at DHMC. And of course, his shunt was completely whacked, set at a very high setting that barely let the fluid pass. Later, after it was reset, and as I was putting him into his carseat to head for home, he gave me the first real smile since that wretched day of the seizure. This evening, he actually perked up enough to eat his dinner, to pat the cat, and to make a half hearted attempt to pull sister's hair. This is major improvement from the half drowned, semi-comatose, limp little man from earlier.  I am convinced that on top of the medical induced overdose and the weariness from the seizure, Leo also was suffering from inter-cranial pressure.
He still is definitely not himself, but that, the docs tell me, is only to be expected after such a huge event as this. They also say that there are many different drugs out there to help control seizures so it is only a matter of trail and error to tailor the perfect cocktail for Leo's. I, however, think strongly, and told them so, that in Leo's case, there had better not be any more error, because his seizures are way to terrible to trifle with. So I am hoping, and praying, that from now on, Leo's new med will cure those sparks and spikes in his brain, and that his team will be able to monitor his growth and development more closely, so that for once, we may cut off the seizures before they start.
After getting a taste for the potential our little man has, after seeing his develop so amazingly, we can't take any chances with that, with him.

So tonight, I am trying to smooth out the frown lines, trying to ease the tension away, because when we were all sitting on the couch watching the olympics, and laughing at something or other (maybe the synchronized diving?) Leo was laughing too. And that was the best gift so far, if only because we got so close to losing it.


Limp Leo this morning before shunt adjustment

Concerned big sister


And Leo sitting up, petting the cat, and watching the olympics before bed tonight. (after shunt adjustment) 
















Comments

  1. I'm so glad the shunt was figured out and that he's doing better! Keeping you all in our prayers!

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  2. sending some big HUGS. this would be stressful; I pray that it can get better... Lord have mercy!

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  3. Lord have mercy. That was either your guardian angel or his.

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  4. Well done, Mom...Thanks God for ALL His Blessings, Prayers, Guardian Angels :-) Big Hug to you all...yeay for Leos little giggle! Prayers continue

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  5. Praying for all. Leo is lucky to have big sister Nika. Is that a seraphim quilt?

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  6. Mama's senses always work.
    AdrianaB

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  7. That would make me so mad that they forgot to adjust the shunt! Geez! Good thing you are his advocate.

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