Josiahs Hospital Stay June 2015

Our newest update on Josiah is that he was admitted to the hospital on Fathers Day.  He had been struggling already for awhile and then on Fathers Day he had 12 grand mal seizures.  We called the on call neurologist and he got us straight into the ER.  We were at my parents in Victorville and couldn't call an ambulance without an enormous bill or having to go to another hospital so we drove down the hill to Loma Linda praying all the way.

I ran from the parking structure across the street into the ER carrying Josiah as he was seizing.  It was uphill and a ways and I was so out of breath.  Im not as strong as I used to be.   If it wasn't so sad it would be funny.

He was seizing pretty badly.  They were ready to give him a shot of Ativan.  In front of a bunch of nurses and doctors in the ER give the cannabis oil and they saw how it stopped it in its tracks.  Unfortunately the seizures kept coming back, but they saw how effective it could be and were completely supportive.  He was loaded with phenobarbitol and we started him on topamax again.  Yesterday, he was either asleep or awake and seizing.  After seeing his reaction to the topamax I requested that we take it off as he was completely miserable on it.  I think he was hallucinating, he was gagging, and sweating, he stopped communicating with me, his eyes were twitching back and forth and he was planking and very, very irritable and miserable.  So, yay!!  Off of Topamax.

We are going to try Valium next.  They gave him his first dose today.  I'm praying that this will help him.  He is fairly stable, but he has been sleeping so much.  I don't know how sustainable this is.

My main goals for him during this hospital stay are becoming comfortable and staying as seizure free as possible, as well as finding maintanance medication that works.  We are continuing the medical cannabis in the hospital with the doctor s approval and monitoring.  It is definitely helping him with his comfort level.  I think it is helping with his seizing too, but we may need a combination of pharmaceuticals and cannabis at this point.

Tomorrow morning we will talk with the doctor and see how he did on it for almost 24 hours.  If he did well, we can come home, if not than we will be staying at the hospital to see if we can find something that works.

We'd appreciate any prayers.  I'm pretty tired (but than when am I not?  :)) Also, for the kids as they will be only having one parent at home as Dave and I switch off and on staying with Josiah at the hospital.  The kids aren't really allowed in the hospital.  My parents are helping out a lot as well.

The Lord is good.

One thing I think about often since we have moved to this house and are right at the foothill of the mountains is this verse,

"I lift up my eyes to the mountains.  Where does my help come from?  My help comes from the Lord, maker of heaven and earth."

Here are a few pictures just because.

Thanks for any prayers.  Love, Rissy