Monday, July 6, 2009


Jacob came home from the ER around midnight last night. They decided to wait until this morning about next steps.
The oculogyrical crises started the minute Jacob woke up this morning, so after having talked to his main neurologist I had to take him in. We were then waiting for the next spell to decide what medication to put Jacob on, and if he would go to the ER or ICU - BUT he never had another spell! I was in the clinic for 5 hours, and no more spells...
It was frustrating, but at the end, this is of course good news. We're all at home tonight, and the oculogyrical crises should be gone for this time. The reason it got so much more serious this time is Jacob's problems clearing his secretions. It definitely was impacted by these spells.
His neurologist is pushing for a tracheotomy. We went through this 1,5 years ago due to Jacob's sleep apnea. It is not an easy decision, but probably more urgent this time than last time. We're starting to balance pros and cons, and will also consult Jacob's main doctor next week. She is typically against a trache, but we'll see what she says this time. I had this whole discussion about quality and quantity of life with his neurologist today, but I'm too tired to even make any sense of it tonight. That will be for another journal entry!
Sleep tight, Maria.

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