Monday, May 4, 2015

We finally made it back after almost three weeks in Portland and Hawaii.  Maybe its because I'm a Gemini but I've always had a love/hate relationship with traveling.  I love seeing and exploring new places but I hate being away from the comfort of my home and if you know me well you know I'm terrified of flying.  My husband is from Hawaii and we've been several times since we've been married.  This trip was different. I never got to fully relax and enjoy it.  Worrying about when and if Paloma would have a seizures or if she would have a status seizure on the plane left me in a panic. The time change, med time changes, excitement, heat and steering from her strict diet proved to be too much for her I think.  

She had three seizures while we were gone.  The morning of the day we were supposed to leave I woke up because she felt hot and she had a fever which was my worst fear that she would get sick.  Her seizures are almost impossible to stop when she has a fever.  We ended up going to the emergency room and she seized for close to three hours, a new record.  To their credit the doctors at the Army hospital we were sent to don't see many seizures. But, it was by far my worst ER experience.  I came prepared with my detailed plan for what to do if her seizure doesn't stop.  They glanced at it and didn't follow it.  They scrambled around and one doctor even pulled out a book and said, It says here to give this drug.  I quickly said, that is a sodium channel drug, if you give her that it might kill her.  They were in the process of intubating her when she finally got a dose of the drug that should have been given first and she came out of it. 

 At one point I heard some of the nurses in the hall talking.  They could not believe the amount of drugs she had gotten.  We spent the night and the next day I was ready to leave. The doctor said it was dangerous and risky for us to leave.  I tried to tell her this is our life we do this frequently but she was having none of it.  She even said she wanted us to start back on phenobarbital since Paloma had a "breakthrough" seizure. I almost laughed, and said, Its not a breakthrough seizure, she just has seizures and she will forever.  It took me almost a year to get her off that shit.  I finally told her we were leaving and there was no way she could stop us, and we did, we left against their wishes.  We hopped back on a plane the next day and got back safety.  It wasn't all bad.  The kids got to meet and get spoiled by their family.  Paloma swam in the ocean for the first time and didn't have a seizure.  We ate amazing food and for a few brief days got to pretend that we had nothing more important to do than drive around the whole island stopping at every beach along the way.  I think it will be awhile before I brave heading back over again so I will treasure the good days we had for years to come. 

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