Monday, November 9, 2009


The EEG has not yet improved. Jacob is still in status epilepticus. We're going on day 9 now. Even if Jacob is seizing all the time, he does give us smiles and is interacting with us, you just need to stay close to his face, since he can't track well with his eyes.
We have talked both to Dr. E and Dr. C separately today. One is recommending the coma and the other one thinks we should try to medicate him, since the coma is a too big risk for him.
Tomorrow, we're having a pow-wow with both of them as well as our Belgian metabolic doctor who finally figured Jacob out. It's not just a decision about the coma. It's literally going to be a decision regarding Jacob's future care. Do we do whatever it takes to make Jacob better or do we manage Jacob's "new" state of seizures? I don't have an answer tonight, since I really need to hear their point of views in the same room.
It has been a hectic day in the ICU. An infant came in yesterday after having stopped breathing in the parents' bed. The police was interrogating the parents as I was picking up my lunch in the kitchen. I could really feel their pain and shock as they talked to the police. Tonight, I still see the young parents, their friends, parents, and grand parents walking up and down the hallway, looking for answers on why this could happen to them. You feel their pain through the glass windows. At the same time, I am thinking that I might have gotten a little bit too used to the ICU. There is not as much facing me in here anymore as it did the first time we were here. This has sort of also become a familiar place, if not desirable.
I had a nice break this afternoon/evening. The program director from Adam's camp, Lisa, came by. She is a young burst of energy. We had great conversations and dinner, and once again Jacob has brought a person into my life that I am very happy to have gotten to know. She is organizing a night away for Sarah with both her parents. It's a family who has this huge retreat in Parker that we get to enjoy to ourselves. We'll see what is the right timing for Jacob, but it would be great for our little girl to be the center of attention.
Many of you have asked about Sarah. I am thinking she is doing pretty well considering that she hasn't had her whole family in one spot for 9 days. She misses Jacob, no doubt. Jacob gave her a teddy bear yesterday. Every time she gives him a hug, Jacob feels the hug. Sarah loved the idea, and is now sleeping with two teddy bears in her bed. She also told me over dinner last night that she has thought about this machine that she will put Jacob in. The machine will remove all Jacob's mitochondria, and he will come out of the machine not being sick anymore. She knows so much about this world that I wish she didn't have to, but she sure is a smart cookie!
In the middle of another crisis of Jacob, we feel so blessed to be surrounded by so much love and support. It never stops to surprise me. We're not sure we could do it without you all.
Thanks everyone, Maria.

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