Sunday, November 4, 2012

HELPLESS



TSC is a tricky condition. You never know what emergency will pop up next. It renders you helpless. Our biggest concern at the moment is Nami’s seizures. We keep playing merry-go-round with anti-epileptic medications. We never seem to be able to find the right combination of medications. The doctors have told us he’s medicine resistant. Some combinations partially work, but only for a while. Then the seizures get increasingly worse again and we go back to playing guessing games with medications.

Is it possible for your body to go into a sort of shock, even if you haven’t been physically harmed? I am alive but somehow out of my body. I think it’s my body’s way of dealing with our situation. What used to be a bad day has become our every day. Over the past few months Nami has been having 20-40 seizures a day. Recently he has had upwards of 100 seizures on some days. They have gotten to the point that at the beginning of each seizure he stops breathing for a few seconds, gasps for air, and then continues the seizure for a minute or two. I have to run over to him and catch him before he falls. He spends his days disoriented and off-balance…falling all over the house. He’s cranky, but who wouldn’t be in this situation? Even as I write this, I can’t believe this is our reality. I can't believe I watch my son stop breathing multiple times a day, every day. Nami is currently on 4 medications and is receiving rescue medicine in addition to those. It doesn’t seem safe, but neither does watching him continually seize. I want to fix my child, but I can’t.

I titled the blog “Life As It Happens…After It Soaks In” because I think it’s important to let things settle before making any conclusions. It lessens the likelihood of saying something that I may regret later. I have to admit, I am writing this post before letting it soak in.

This is the first EEG that detected seizure activity. Countless EEGs have followed.

3 comments:

  1. Hang in there. Your honesty is very touching.

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  2. Thank you for this thought provoking, well written blog.. My daughter has TSC as well. I will be praying for your family. Take care.

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    Replies
    1. Thank you for your support. Thoughts and prayers for your daughter and your family.

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