Thursday, November 19, 2009


We all gathered at Jacob's room at 2 pm. Dr. E., Dr. C., the attending epileptologist, his nurse for the day, and one of his attending ICU doctors. It was a bit tense in the room, since it was clear that we didn't agree with the epileptologist's plan to do nothing. It was also clear that the epileptologist had escalated to our neurologist this morning that we all had to get on the same page. I couldn't agree more.
The epileptologist started by telling us that we didn't really have many options for Jacob. There were not many medication options left, and she wouldn't recommend another coma for Jacob. At the same time as she's telling us this, Jacob has been seizing for 3 hours non-stop despite valium. We tried to make it clear that we are willing to do whatever it takes to get back our old Jacob or part of our old Jacob, since him seizing for hours and hours throughout the day is no life.
After having gone back and forth without really getting anywhere...Dr. E. suddenly clears her throat. She declares that she is the one who knows Jacob the best, since he has been in her care for years and she also knows us very well by now. She made it clear that we our "the smartest" parents there are out there, and that we completely understand the outcome of the mitochondrial disorder, but at the same time we want to give Jacob the best life possible for the time he has left. We're not looking for long-term solutions, but something that will work fairly quickly for Jacob in order for us to bring him home. The room was completely silent as she spoke, and it was like we finally started to get somewhere. We were starting to move forward. Suddenly, there ARE medication options for Jacob, and the epileptologist and Dr. C. will come up with a plan for the 4-5 different medications we will try. We will also try the ketogenic diet, if we're not getting anywhere with the first 1-2 seizure medications. They have started to implement the plan as of tonight. The first try being to increase Phenobarbital to the right level for Jacob.
We also found out that this "plan" will take 4-5 weeks to implement. We're very lucky if we get to go home by Christmas. We also got to talk a bit more to one of the attending neurologist, and he told us that no decisions are wrong from here on, and that we as Jacob's parents will be in charge of how much intervention we want to do for Jacob.
I am glad we have a plan, but it's so sad to see Jacob going in and out of seizures. We always wanted to give him quality of life, and right now it's hard to see it. There are hours throughout the day when we have no contact with him at all despite medications. I always saw a respiratory illness as Jacob's biggest enemy, but have now realized that it's his brain and his seizures. They are saying 4-5 weeks for Jacob to come home, but at this point I think we really need to count ourselves lucky if we get to take Jacob home again. It feels really far away as Jacob is fighting through his seizures tonight once again.
Thanks to everyone who has lit candles for Jacob around the world. A friend of mine started this site for Jacob where you can lit a candle for him as well:
I keep hoping for a better day tomorrow.
Good night, Maria.

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