When hope is almost gone...

Sunday, January 10, 2016

After what felt like the thousandth time I'd called 911 because a seizure wouldn't stop, I stood over Paloma and prayed.  I felt silly when I remembered I didn't believe in God at all anymore, how could I?  How could anyone believe in God after powerlessly watching their child suffer over and over.  

The week started off good. I was hopeful, a new year, a new cannabis oil.  I made a plan for my week with Paloma.  I planned weekly visits to the library and children's museum.  She stared seizing at the library. I gathered her up in my arms and put her in the car. On the mountainous, twisty, no shoulder roads that take us to our favorite little library I had no choice but to pull over and give rescue meds.  The seizure only continued into a non convulsive status as we drove home.  Nearly two hours after it started we made our way to the ER when the seizure turned into a tonic clonic once again.  After filling her with Ativan and phenobarbital her little body finally stopped shaking.  

The ER doctor looked concerned and said, "when is the last time you saw your neurologist, what are they doing?  Maybe you need to up the keppra." I looked at his face, full of concern and said, "they are no help whatsoever. We are totally on our own here."  He couldn't believe it.  He was ready to air lift her after two hours seizing and sure enough when he called my neuro she said not to do anything.  

The two days after an ER stay are always hell.  Screaming and a drugged up, wobbly toddler that can't walk, falls down constantly and has no idea why her body is suddenly not working.    

I called the neuro during the screaming and said, "I will do anything to make this not happen again. I can take the seizures but not the ER, near death, drugged up trips.  I can't anymore."  I could tell by her voice my call was a waste of time.  She wants me to come back in next week to talk about more options. I have no hope in her abilities to help my child.   

My hope is nearly extinguished.  But, still I have things to try. I can't sit back and do nothing.  A friend is sending me another cannabis oil that could potentially stop seizures so I wouldn't have to use rescue medication and have it potentially fail sending us to the ER.  My husband is pursuing getting out of the military after this enlistment is up in August so we can move to a state where we could get what we need for Paloma.  I'm seeing a naturopath in Portland soon. He helped a friend whose son has seizures recently so I figured it was worth a shot.  I sold my beloved VW to pay for it.  The only thing I have of any value.  I'd do anything if I thought it would help her.  I'd walk to the moon and back.  I can't let a silly thing like a dream get in the way of the possibly of giving her a better life.










3 comments:

  1. You most certainly can't and won't give up. I am so sorry to hear that your beautiful girl is struggling. I know this all too well. I'm here, abiding with you. If you ever need to talk -- for real -- please call me. Know that even if she is struggling, you are doing everything that you are able, that you are the best mother, that she is so loved beyond love. My email is elsophie@gmail.com. May you be well. May Paloma be well. May you be guided toward what will help her.

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  2. I'm praying that within your storm, you find Peace. I have a listening ear if you need it. Contact me at anytime.

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  3. You are on my mind always. You are strong and so is Paloma.

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