Monday, November 16, 2009


Jacob has truly learned me what life and love is about. Today he's starting to come out of the coma, and we start to see a little bit more of our Jacob. He has opened one eye today, is squeezing my hand, and has half a smile. It just warms up my whole body to see the signs of him coming out of the coma. I realize now that having your child in a coma is very stressful despite it being medicine induced. It doesn't matter. You have absolutely no contact with your child.
The really sad news is that his seizures are back. They do see activity coming from the right side of the brain again. It's not as bad as before, but it's there. They can also not yet say how it will be, since he still has Pentobarb in his body. We're hoping it will not be as bad as before, but it might take another day or two before we know for sure. It's really hard news to get, but at least we tried, and if we can improve his status at least a bit, I guess it was worth it. It's just one of those times when no decision was optimal.
We'll work with neurology over the coming days to see what seizure meds he will be on moving forward. They will definitely have to add one more medication. They will take him off the EEG tomorrow, and then do a 24-hour EEG later in the week to see how his new home meds will work for him. We might also put him on the ketogenic diet that has improved seizures for many kids. We'll see if Jacob fits the profile for that or not.
The day of removing his breathing tube (extubation) is also coming up. It will be tomorrow or Wednesday. I am nervous, since it failed last time. It was very hard on Jacob last time. They will give him steroids preventively to hopefully get rid of any possible inflammation of his airways.
In the middle of all the ICU drama, I had to take care of a court ticket today. I ran a red light about a month ago (and it was not on the way to ER...), and was supposed to show up in court tomorrow afternoon. It's impossible for me to leave the hospital right now, since you never know what the day will bring. We got the social worker to write a letter for me, and hopefully they write off the ticket or at least give me a new court date. I somehow feel that we deserve to not have too many day-to-day annoyances right now with the things we have to fight with Jacob each day.
Send us positive thoughts and prayers as Jacob comes out of the coma completely and the extubation is coming up.
Love, Maria.

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