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Snowed

Yesterday I woke up to find Leo in the relentless grips of the seizure monster. The night before he was acting under the weather, runny nose, mild fever, and cranky attitude. But it didn't start there. This whole past week has been one problem escalating into another one, until yesterday it all came crushing down. I saw it coming, so when the staggering mass hit my shoulders yesterday, I didn't feel surprised. It was just inevitable.
Five in the morning, I woke up because in my sleep I think I heard Leo's breathing change, and when I ran to his crib and felt his jerking limbs, I knew right away what was happening. We had the emergency seizure med kit, and feeling slightly more in control, Justin and I gave it to him, only to see that last vestige of control slip away when the darn thing didn't work. DHMC Emergency said to call the ambulance, and then everything went, if possible, from the scary and serious into the slightly farcical, as the ambulance couldn't make it up our very steep and icy driveway, so we slid, in our own car, down to meet them, Leo and I got in, and then the ambulance proceeded to take the most round about way possible to pick up a paramedic who then asked me how administer another dose of Leo's med. Seriously? These people are supposed to be professionals? Next time, we get there on our own steam, thank you very much!
Eventually, we got to the ER where they competently put in an IV and gave him the dose of the stuff that actually works. Again, an hour or more from the start, his seizure finally shuddered to a stop.
Then, began the barrage of tests. An array of blood draws, MRI, Xray, urine, throat swabs, and invasive pokes and prods in little man's every nook and cranny. He cried and fussed, slept and threw up, cried and then he just shut down. He was snowed.
Between the seizure and hard core drugs, he wasn't just snowed, he was snowsmashed.

And after an exhausting day in the pediatric ward where Leo woke up and to his dismay found himself "wired," and after battling with his PTS flashbacks I felt a little bit cranky myself. But thank God that all those tests proved what my mom instinct was telling me all along, that little man was just in the wrong place at the wrong time. His fever spiked just as his keppra wore off, which caused the perfect setting to host a monster seizure party. His fever? Just a viral bug, one that all our kids, and ourselves included, get every winter. The difference between us and him? For him it means entering the battle ground and fighting a battle with something way out of anyone's control. It means an ambulance and needles, MRIs and tests. It means tears.

I saw it coming, but I still couldn't do anything to stop it.

All I could do, was get under the crush with him, hold him, and wait until it was over. This morning, he is still cranky and sleepy, dozing between drinking bottles as if he spent time in the dessert, and methodically pulling out our saintly cat's fur. I think she likes it.

We have, spread out on our kitchen counter, a whole new arsenal of emergency medicine. This one is called Midazolam, and after drawing it up in a little syringe and attaching a special atomizer, the stuff is squirted up into the nose, where it is supposed to, get instantly into the system to stop the seizure. Yeah, Diastat was supposed to do that too. You don't mind if I reserve judgment at this point, do you? Leo has that effect on things sometimes!

Also, to add a couple snow heaps to the pile, there was another scheduling fiasco concerning his surgery on the 1st. Apparently the day he was scheduled for, is also a day that our neurosurgeon is out of town. At this point, words just fail me. Really DHMC? Really?

So to fix this blatantly obvious mistake, they are offering to do the surgery this Wednesday, the 25th.
Justin and I aren't holding our breath, because the possibility of little man being back to 100% by then is kinda slim. And I'm not sending him under the knife unless he is 100% or more, not a hair less. We decided to wait and see how he is on Sunday, and then we will make the decision and let them know about it on Monday.

With the help of some dear friends (thanks Amanda for the visit and lunch in the hospital!) and as always, with the love and prayers from all of you, we are pulling ourselves out of the snow heap by our bootstraps, and exercising our patience, our love, and faith, in the belief that everything will sort itself out, and that this winter, though threatening, will not kill our spirits in the anticipation of spring sunshine.

Seizure monster?
Bet you didn't see this mob of people standing behind little Leo with the machine guns, right?
Yeah, bye bye now.















Comments

  1. wow; so sorry for this! Hugs; lighting a candle to the Theotokos for you all.

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  2. Bless the beautiful child....he looks every bit of the exhaustion....there are enough prayers going to light up the horizon, so keep watching for the dawn.
    ~~Claire

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  3. Oh, God:(( Lord have mercy.. he is so beautiful and strong. Praying for him..

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  4. Lord have mercy! I haven't introduced myself, but I've been following your story from the start. We have several mutual friends, I'm a pediatric nurse and a priest's wife. I'm sorry so yesterday was so awful. I pray for you all often. - Kh. Rachel

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  5. Doug & I will be praying for Leo's surgery this Wed.--before, during & after--and trusting all will go well. Afterall, God's work never ceases to amaze!
    Love to all of you,
    K&D

    ReplyDelete
  6. Poor sweet boy. And poor mama. That is a lot to deal with! That is one strong boy. Thanks again for sharing...will be praying with specifics now. Maybe look at the surgery scheduling hiccup as God's way of protecting you from something that wasn't supposed to be...something HE knew that others didn't...
    Tina

    ReplyDelete

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