Tuesday, November 10, 2009


So, today was the big day. We had to make a decision on how to move forward, since pure medication would not get Jacob out of status epilepticus. I could feel that I was getting nervous the closer we got to the meeting, since I still didn't know what was the right decision for him, and what his doctors would recommend.
We started out by reviewing Jacob's year, and the number of hospitalizations and ER visits he has had this year. You should take a guess, if you have followed Jacob this year....
17 hospitalizations and 6 ER visits (not leading to hospitalizations). This is in comparison to 5 hospitalizations and 4 ER visits in 2008. 2 of the hospitalizations and ER visits in 2008 happened the 2 last weeks of the year, so really 2008 was a good year. A really darn good year. It sometimes hurts to think back about all the skills he has lost since then. None of the doctors had to point out that 2009 has been a year in the wrong direction for Jacob despite his upbeat personality.
What truly became the decision-maker in this hard decision was when our metabolic doctor with his thick Belgian accent said: "Would you intubate Jacob, if he would have pneumonia?". The answer is a "yes" without a doubt. "So, if that's the case, why would you not do it to stop his seizures?" I guess that we needed to have this horrible choice put in the right perspective. So, after Dr. E jumping in saying "WE would intubate him, if he had pneumonia, we knew that this was the road we were going down. Still not willing to give up on getting Jacob back to baseline, even if it comes with big risks and no guarantees.
Since it was my evening to be with Sarah, and I also needed to get my H1N1 shot, it was weird to leave the hospital knowing what Jacob would have to go through tonight. At the same time, I could see how happy Sarah was to be with me tonight, and how much she is missing me, so I know deep inside that tonight I should be at home with her, and Joakim's place is next to Jacob's bed. It's just one of those times when you want to split yourself in half.
Jacob is intubated right now, has a central line in addition to his medi-port, and has an arterial line, so they can measure his blood pressure at all times. He will be on a Versed drip for 48 hours, and if they don't see any effect within 5-10 hours, they will switch to an even stronger medication. After 48 hours, they will then slowly take down the medication, and by Monday night he should be completely off the strong medications. The tube should come out before then as well. At the same time, Dr. C. is working with other epitologists to find the right medications for Jacob to then maintain his seizures.
I know this was the right decision, but it sure was not an easy one. By the end of the day, it came down to trying to give him the highest quality of life we possibly can. I still can't stop crying when I think about what Jacob has to go through in his life to simply be.
Good night, Maria.

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