Alright - for all my beloved friends and family and all the other lurkers who may or may not be reading these entries: here is the long awaited follow up to my last post, titled “Nap Blog”. It has been around 9 weeks since that quiet summer afternoon when I jotted down those words.
In a nut shell, here are the immediate updates:
Our little one's blood tests revealed abnormalities in her liver function which -- after about 10 Hellish, perplexing, frightening, exhausting days in the hospital, numerous blood draws, tests, scans and one exploratory surgery -- was finally determined to be caused by Biliary Atresia, a very rare liver disease that strikes every 1 in 15,000 or so infants. With odds like this, our family needs to start playing the lottery more often.
In Biliary Atresia, the bile ducts in the liver are damaged or completely missing so bile has no means of exiting the organ, thereby backing up and causing progressive damage. The liver becomes cirrhotic and begins to fail. Without the option of a liver transplant, she would likely not survive past 18 months. Thirty years ago, a Japanese doctor pioneered the Kasai operation which gave BA kids a chance -- by fashioning a makeshift biliary duct out of a piece of the small intestine. Although outcomes are not overwhelmingly effective in most cases, it gives kids a bridge and buys them some time. Most will eventually need to have a liver transplant. Prior to that, parents of babies with this condition could do nothing but sit by and wait while watching as their kids slowly died of liver failure.
In Biliary Atresia, the bile ducts in the liver are damaged or completely missing so bile has no means of exiting the organ, thereby backing up and causing progressive damage. The liver becomes cirrhotic and begins to fail. Without the option of a liver transplant, she would likely not survive past 18 months. Thirty years ago, a Japanese doctor pioneered the Kasai operation which gave BA kids a chance -- by fashioning a makeshift biliary duct out of a piece of the small intestine. Although outcomes are not overwhelmingly effective in most cases, it gives kids a bridge and buys them some time. Most will eventually need to have a liver transplant. Prior to that, parents of babies with this condition could do nothing but sit by and wait while watching as their kids slowly died of liver failure.
Life has been so busy that it will take me some time to fully detail the impact this turn in the road is having on me. Writing a blog, which was my newfound and fledgling hobby until those crazy days in August, seems so completely unimportant in the scheme of things. It took me a long time to get back to this -- but I realize writing serves a multifaceted purpose: it, as always is therapeutic, but it is also now a way to keep others apprised of how things are progressing. People who I would otherwise lose touch with because there are just not enough hours in the day to talk on the phone or type out emails. In a later post, I will explain how and why I even have enough time to do this small amount of writing. ..more soon, I hope.
