Sick baby update for April 11, 2009

Here is the previous post on this child, who is now back in the hospital until the 17th. The reason for the stay is cholangitis, an inflammation of the bile duct, and the baby now has a PICC line in for treatment with antibiotics. The Kasai procedure has been a moderate, but not a complete, success, and the doctors now say that the goal is to have the baby grow as much as possible so that he can have access to a bigger donor pool when the time comes to have a transplant, which is now inevitable (a bigger child can use a whole liver instead of just a piece of one).

The family is planning to move back to Japan in May for good. Even though they have “good” health insurance here, they are facing the BS that always comes with our system. For example, the insurance company wasn’t going to pay for home nursing care of the PICC line, so–like magic!–a longer stay in the hospital because “necessary,” which the insurance company will pay for. So it goes in our system: the insurance company thinks it’s saving money but ends up costing itself more. Our system is full of waste and hurts people every day. It must change, it will change soon.

To me the child’s life force seemed strong, almost as if the whole liver deal is just an annoyance, an inconvenience to him. My intuition is that he will get the liver translplant eventually but will continue to bulldoze through life and not let his liver rule his existence.

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