We are learning that God’s plan is not always our plan and trusting in Him is the most important element of this ordeal. Biliary atresia was certainly not in our plan! If you look it up online, it can paint quite a grim picture of a life with this disease (especially if you are sitting in the hospital waiting for test results). It most certainly leads to liver transplant at some point in the patient’s life. That point is coming all too soon for Thatcher.
Rather than re-live the last four months since his diagnosis, I’ll just summarize in saying that they have been spent in and out of Vanderbilt Children’s hospital with IV antibiotics, weekly/bi-weekly check-ups at the liver clinic, lots of bloodwork and needle sticks, and a twice daily routine of meds to keep him going strong. He’s quite the high maintenance little boy! After his first whirlwind trip to the Vandy emergency room following labs from his 2 month check up, Thatcher underwent a major surgery on September 27 called a Kasai procedure. This procedure “re-routes” the intestine directly to the liver in hopes that it will allow bile to drain from the liver – a critical function that Thatcher’s liver cannot perform on its own. Thatcher does not have the necessary biliary system that would normally do this task. This was quite a day. We felt so hopeful and terrified, but at least they were doing something to fix our son.
Unfortunately, Thatcher’s Kasai procedure did not work, or drain, as was hoped. Apparently only 1/3 of them do. Figuring that out during the first 3 months after the procedure (the time period they allow to determine if the Kasai works) was filled with ups and downs as we waited to see if Thather’s biliruben would fall (biliruben is the by-product that he is not excreting properly and what causes his jaundice or yellow skin. Biliruben also causes itching). Knowing what we know now, the Kasai really only buys the patient time to get bigger and in better shape for a future transplant. In short, Thatcher came to this earth with a dud liver so we’re going to get him a new one!