FROM WEDDING TO ICU

Tonight brought us back to our reality after Jacob being out of the hospital for two straight months. Jacob's oculogyrical crises are back, and they became longer and more intense as the afternoon went by. He's now on a Versed (valium) drip in the Intensive Care Unit (ICU) at Children's Hospital.
Last month, Jacob started having oculogyrical crises and we never had to admit him to the ICU for treatment. He had a few a day for 6 days, and then they were suddenly mysteriously gone.
As we saw two episodes yesterday, we were hoping for the same pattern this time around. This morning, he had another four. He then had a great nap, and looked really good and chatty as we left Jacob with his nurse to drive up to Evergreen for our friends' wedding.
It was a beautiful outside wedding with the forest on one side, and a little river on the other side. The sun was out, but it wasn't hot. Two beautiful people in love and happy! The icing on the cake were my friend's three children in the wedding. The bride takes care of them every day, and they sort of perfected the wedding with being simply kids!
After the ceremony, it took us a while to settle in. We had to get the kids situated, getting bags and wheel chair back in the car, and we were finally ready to greet the bride and groom, have a glass of wine and chill out...
I could see right away that something was wrong when Joakim came back from the car. Jacob's nurse had taken him to Children's hospital via ambulance due to the oculogyrical crises becoming much worse, and him simply not being able to get out of them.
During the 1,5 hour drive back to Children's with poor phone reception, I had time to talk to his neurologist and the Emergency Department doctor about a plan for Jacob. Instead of a nice wedding dinner, we had a McDonald's meal in the car!
I have been calling ambulances in the middle of the night with no clothes on me, trying to put on clothes as I am on the phone with 911. Today, I got to experince walking into the Emergency Room in a red dress, high heels, jewelry, and make up - and no ID on me! It's good to be a frequent flyer in a situation like that, since we all got in without identification.
Jacob is resting, but not yet asleep. We have seen no more oculogyrical crises since we got to the ICU. That could be a sign that the Versed is already doing it's work. If things go according to plan, he will be on Versed until tomorrow night, and we get to go home some time on Monday. This is if Jacob has no other plans :-
We'll spend another 4th of July weekend in the hospital due to oculogyrical crises. Last year's crises are still clear in my memory. Joakim and Sarah and a good friend of Sarah will all go to the bike parade and BBQ party at our pool tomorrow morning. Jacob and I will chill out in the ICU. We're then going to hang out here together with Jacob, maybe watching a movie together, having some good food, and just enjoy the day.
Send positive thoughts that Jacob will make this a quick stay, and will be back to normal in a few days again!
Happy 4th of July!
Love, Maria.