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Hard Days Night

Saturday evening we ended up in the hospital.

I went to get Leo up from his nap and though he smiled at me when he saw me, I still freaked out. The left side of his body was jerking uncontrollably. I grabbed him, and tried to will the seizure to stop, but it wasn't stopping. Within five minutes we were headed to the ER. Even though they had given us an emergency diastat kit way back when Leo first started having seizures I decided to not even fiddle with it, since the dose was meant for a smaller baby. As it turned out, they had to give him two doses of Ativan through an IV to get the seizure to stop. At that point, it had been going on for an hour. When it finally stopped, Leo just tuned out. He fell asleep and managed to stay asleep through an X-Ray of his shunt, and another quickbrain MRI. Because the seizure was so long, he lost control over his left arm for an hour, which we were told can happen in these circumstances. Finally we heard back that his shunt is working perfectly, and that his MRI was normal. (At least normal for him!) This was a big concern, and we managed to breathe a little after that. However, they still decided to keep him overnight in the pedi ward. I think that Justin and I were in shock and a lot of stuff went over our heads that night. It was very much a twilight zone. Although they had told us that seizures might be a very real possibility for Leo because of his brain structure, and tried to prepare us for it, I guess like everything else, we thought Leo would be different. That he would break this mold too. As it is, this is threatening to break us! What a wake up call. As if we needed more of those!
The attending neurologist that night has made it his mission to "figure" out our Leo. The night little man and I spent there was a constant hassle of more tests and exams. And last night he calls with a request for Leo to go to the lab today to give more blood for some other tests involving carbohydrates and proteins. Part of us is horrified by him opening the Pandora's box of what ifs but we can't refuse on the off chance that he might find something that might help. Why is it that we need to experience pain and fear for benefit? And how can you explain it to your baby?

 They did let us go Sunday afternoon with a higher dose of his usual Keppra. It has been many months since his dose has been adjusted, so we are hoping and praying that this will be enough to keep those new and terrifying seizures away. I'm feeling like we are stuck in the middle of a threatening landslide where at the bottom is a mass of writhing fear, and I'm so very tired of being afraid. And the feeling is so much sharper, because since his surgery we have been lulled into a false sense of security in Leo's health. I'm not sure what this means for our future, in what ways things will change, but if his Keppra doesn't control these seizures, we will have to move on to more powerful drugs with more nasty side-effects. Please God, please, please God help our fear, and strengthen our trust! Lord have mercy on us sinners!

Doesn't it seem like rubbing salt into the wounds to use such a brand name for baby hospital beds? Yeah we know life is hard, but must you make it impossible too?




Comments

  1. Poor little guy. I know how terrifying that is, walking in and finding your baby seizing. Avram once had a three hour seizure. The way they get "snowed" afterwords is so sad, but at least provides some rest. Praying for strength your way.

    ReplyDelete
  2. Oh my. That must have been terribly frightening. I'm glad they were able to get it under control. That post-ictal state afterward has always seemed to me to be a blessing as it provides some rest.

    Even before I saw the caption that "HARD" on the bed frame jumped out at me! How dreadful (with a certain dark humor).

    OTOH, I bet Leo was the absolute cutest baby on the ward. (:

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  3. I am so sorry to hear that you have all gone through this. My prayers for Leo, you and the doctors as you determine where to go from here.

    And, Mat. Anna is definitely right, I am sure he was the most adorable baby in the ward. He is just too cute for words!

    ReplyDelete
  4. so sorry! that would be so scary! he is SUPER cute for sure. Will light a candle for him tonight.

    ReplyDelete

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