Tuesday, November 3, 2009


I am sitting in our office at home, since it's my night to sleep in my own bed tonight. Sarah is sound asleep, excited for her musical she will perform in tomorrow and Thursday. I had a really good evening. Four of my old team members currently in town came to my house as we came back from the hospital. We had some wine, and left overs from our Halloween dinner. It was just so nice to have an escape from the hospital world and being surrounded by true friendship. I don't think they realized what a break they gave me. Thank you so very much Rocio, Virginia, Paula, and Daniela!
We had one of those days when you can't fully take in all the doctors tell you. It was obvious that noone wanted to send Jacob home today. More tests are run to figure out what exact virus he has had for a week now. Secondly, last night's behavior of not seeking contact with me and the blank stares were taking seriously. Jacob was put on an EEG mid-day today. It always feel good when things are happening in the hospital rather than just sitting waiting for things to get better.
We talked to a great doctor in Jacob's clinic today, since Dr. E is still nowhere to be seen in the hospital as he put it (recovering from her jet-lag). He truly believes Jacob has been hit by RSV (respiratory syndrome virus), since it often comes with neurological complications. He also referred to the thick secretions being part of the diagnosis. I am hoping we will know for sure tomorrow.
We had noticed that Jacob wasn't doing great today. He couldn't track with his eyes anymore, and there were times throughout the day where he didn't recognize me or Joakim. His neurologist Dr. C. came by and explained that Jacob is having seizures coming from his right side of the brain ALL THE TIME. The thinking is that this might have gone on since Sunday, and it would explain his unresponsiveness and not being able to track with his eyes. She showed me the curve on the EEG, and I could sort of see what she was talking about. We were talking about a short-term and a long-term plan to get these seizures under control. She now wants to run the EEG for another day or two, and when they are under control, she wants to have a CT scan done to see how his brain looks like. This will tell her if his loss in skills are permanent or reversible. She has a suspicion that he might have had a mitochondrial stroke. Just the word stroke made me really scared. I haven't had enough time to read up on it completely tonight, but I can see that it happens in the mitochondrial DNA.
She is thinking we'll stay the week at least to get Jacob stabilized from a neurological perspective, but also for him to ride out this virus in the hospital.
I am not sure what this all will mean for Jacob's future, and I am sure we will see many shifts in the coming days. I am happy that I called my boss tonight, and told her that I can't attend the company meeting this week with everything going on around Jacob. I am committed to go at some point and meet all my really great colleagues, but it can't be for 3 full days. She was understanding as always. I feel I can now focus on my son, and put my full energy on what needs to happen in the coming days.
It's only 9 pm, but I think I will hit the sack. It's one of those times where your brain is full, and you simply need to charge your batteries in order to get going again.
Send your prayers & positive thoughts Jacob's way! He needs them. I can't believe it's only early November, and it feels like we're already in the middle of thick winter sickness.
Good night, Maria.

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