Wednesday, January 7, 2009


Jacob has been hooked up all day to an EEG monitor. The irony is that Jacob never has any seizure spells the way they are when we have to call an ambulance when he has an EEG. When he is securely in a hospital bed, they just don't happen! We do think he had 2 today though, so we'll see what neurology has to say.

Tomorrow Jacob will have a pH probe study. A tube is inserted through the nose into the esophagus. It will determine Jacob's reflux, and if he needs a repeat nissen surgery to fix it. He will be sedated during the actual insertion, and the actual study takes 18-24 hours.

Jacob is almost off his IV fluids, and back on continuous feeds via the g-tube. This is a sign that we might be able to go home in the coming days. At this point, I think Friday evening at the earliest, most likely Saturday.

They will hold off on inserting the medical port right now. They are not sure Jacob would tolerate anaesthesia well at this point.

Tonight Sarah is hanging out with Jacob in his bed watching Scooby Doo. Jacob is pretty content, just a little bit more tired than usual and at times a bit upset about the EEG cords that he is pulling off from time to time...

I am in my "hospital bubble" as I call it. The world inside here is a bit different than the outside world. The high-lights of the day is our meals and a trip to the cafeteria or gift shop! The pace of the day is pretty static, and then you're surprised again that it's evening and soon time for another day!

Jacob is pulling on all sorts of cords, so time to get back in business!

Bye, Maria.

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