Tuesday, April 27, 2010


This was the day of change. We were told we would be under observation til 3 pm. Everything looked good, no more seizures or oculogyrical crises. No urinary tract infection or pneumonia. Joakim drove in a second time, this time to pick us up. Discharge paper was in my bag. We put Jacob in his wheel chair to leave, and the petit mal seizures were back......Change of plan.
We were going to be admitted for the night to make sure the seizures were under control. We were hanging out in the ER for another two hours before the bed was ready on the 8th floor. Jacob had finally settled into deep sleep, and things were pretty uneventful. Dr. E. came by. She was pretty optimistic despite us getting admitted. She felt sure this was going to be a short visit, and that I should keep Jacob's appointment with her for Thursday.
We got up to the 8th floor, and it's amazing what a support system we have up there. We feel so welcome by everybody. Hugs and smiles, and a true caring for our little boy. It does make a world of difference. BUT, the stay on the 8th floor turned into a very short lived one.
Jacob started out by having another two oculogyrical crises right away. The order from neurology was to then start Versed. It can only be given in the ICU, since it's an IV medication that can impact breathing, and needs close monitoring. I have feared the fish bowl (ICU) after our last stay in December, but could see that it was what Jacob needed today.
We're settled in in the ICU tonight, hoping for a very uneventful night. Hoping that the Versed will take care of the seizures and the spells very fast. Hoping for no excitement. Drinking the hospital's green tea again, back in the cafeteria for a late dinner with only the cleaning staff enjoying their break, meeting lots of familiar faces here tonight that remind me too well of our rough spot right around the holidays.
Sarah can visit again, but decided against it tonight. She had a planned phone call with one of her classmates, and didn't have time for her brother and me! I remember doing the same when I was a kid (Annelie - if you read this, this is for you!), but I do think I was a bit older...Anyway, a bit too busy to really worry about her brother right now.
Looking forward to a better day tomorrow!
Love, Maria.

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