Saturday, November 7, 2009


It's Saturday afternoon in the ICU, and Jacob is in deep sleep. Unfortunately I can't report any improvements in his seizure activity. The EEG is still showing continuous seizures coming from the right side of the brain. He also has seizures affecting several parts of his brain, especially while he's sleeping. They especially want to break the seizures crossing both parts of the brain, and have doubled one of his new medications over the weekend.
We now know what Dr. C. was really worried about on Thursday. They don't know, if they can break the seizures for Jacob. She talked about the possibility of putting Jacob in a coma to see if that would break the seizures. My first thought was if I had heard her right: "coma, really?!"
The alternative is to find some sort of medication that will manage Jacob's seizures "ok", and "live" with Jacob having seizures all the time.
She didn't really give any recommendation either way, and wanted Joakim and me to discuss it over the weekend. The problem is that both alternatives come with a lot of questions and risks, and it's like making a really important decision for Jacob with two pretty shitty choices. To seize non-stop is not great for Jacob. We also know that it's not simply to put him on a new drug, and it will sort of fix this situation. Even on a high dose of Versed drip, he's seizing ALL THE TIME.
Just thinking about a coma makes me think back on the time in June where Jacob was intubated, sedated, and we had to watch him all the time. What are the risks? Will it break the seizures? Will they come back anyway, even if we break them once? How long will he be in the coma? We can ponder these questions back-and-forth, but reality is that we need to discuss them with Dr. C. again on Monday and together make a decision.
Jacob got his CT scan done yesterday, and there is no sign of a mitochondrial stroke. Phew! It could then mean that this is a digression as part of Jacob's mitochondrial disorder rather than one specific incident.
After 3 years and 10 months, Jacob has finally been figured out. We can remove "probable" from his diagnosis. Jacob is now an official Mito (mitochondrial) Kid. A mitochondrial researcher in Australia, who I actually got to hear speak in Indiapolis last year, diagnosed Jacob with the help of his liver sample. Joakim and I have both a bad copy of the same gene. What is the chance of that to happen??? Well, as Dr. E. told us, we're coming from a country smaller than N.Y City, so the chances could definitely be pretty high in a larger perspective. Now the question is which gene is the bad one? They would like to test both Joakim and me to find out. It wouldn't help Jacob, but it might be good information for Sarah one day, and it would help the research of the mitochondrial field. The outcome wasn't a surprise to us, and it didn't give me much relief. It's still the same lousy disorder we have managed for the last 3+ years, and no cure in sight. At least, it closes the chapter of testing for Jacob. He's figured out.
In the middle of crisis, we do find moments of laughter and smiles when something is really funny. Yesterday, Jacob was introduced to the ICU SPA - only available for very special patients! The EEG came off temporarily in order for them to do the CT scan. The nurses decided to give him a good scrub. Jacob got his sculp massaged and hair washed, and he simply couldn't stop laughing! See pictures posted.
I am thinking the weekend will be pretty quiet, no major changes. If a miracle would come along, and improve Jacob's EEG, we would be full of precious joy!
Love, Maria.

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