Friday, November 13, 2009


It's Friday night in the ICU. Jacob is still in deep coma. We have our favorite nurse Luke tonight, so we have been chatting about this and that. I am having my tea (thank you, Heather!), and feeling pretty good as I see the snow flakes coming down tonight.
Joakim and I escaped the hospital tonight. Sarah had a birthday party, so we decided to go out for dinner, since Jacob has his own nurse and is in deep sleep. It was very nice to go out, sip on a glass of wine, and have a meal and conversation with my husband. We haven't had a meal together since Halloween. All our energy is completely focused on our kids. Solely. We're operating in crisis mode as I look at the two of us, so it was great to get a break from that - if only for 2 hours.
Tonight, they will start to wean Jacob out of the coma. They will back out 10% every 12 hours. It means it will take 5 days to back out. We're hoping Jacob will be out of the coma Wednesday night. This is if everything is going to plan. If seizures are coming back as Jacob slowly comes out of the coma, it might take longer...
After the 5 days, the medication Pentobarb still sticks around in your system for a couple of days, and we will see how Jacob will do without his breathing tube, with his secretions, and with his new g-tube medications. It's one of those times when we know we will stick around for a long time, and I can't really see an end to it at this time. Joakim and I both think we're very lucky if we're home by Thanksgiving.
Dr. E came by this afternoon. She's not too positive about Jacob's status. She doesn't want to commit to anything in terms on how long this will all take, and what the outcome will be. I can see that this is hard on her, a patient that is very close to her and where we don't have answers. After we left the topic of Jacob, we talked classical music for probably an hour, and what that has meant to both of our families. It's interesting what you find out about your doctors as you spend so much time with them. She is convinced that Sarah should start playing the cello!
As we all try to wrap our heads around all the things our lovely Jacob is going through, I wanted to share my friend Heather's latest post. She has a 3-year old daughter with a mitochondrial disorder:
Can I Hold You Tight Enough?
Sometimes after a tough week....
When our precious, fragile community seems to be on it's knees...
When kiddos we know and love have been hospitalized, poked, prodded and even induced into a coma so that their poor brain can stop seizing...
I place Samantha on my lap,
And smell her sweet breath,
And kiss her nose,
And feel her eyelashes blink against my cheek,
And think that I cannot possibly hold her closer or adore her more.
I think it says it all for tonight.
Love, Maria.

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