Tyler's Liver Appt

I do love UCSF. Dr. Rosenthal, Medical director, Pediatric Liver Transplant Program is "an internationally renowned specialist in children's liver disease and director of Pediatric Hepatology, with honors in the pharmaceutical treatment of hepatitis B and C, genetics and immunology of biliary atresia and the quality of life after liver transplants in children," so says the internet, met with us on his day off within 12 hours notice. After meeting with him, I am a little too informed about the problems of the liver.

He thought Tyler possibly had biliary atresia, when tubes that carry bile from the liver to the intestine are damaged just before birth for an unknown cause. The bile builds up in the liver and starts to poison it. It is usually seen at birth and can sometimes be fixed with surgery in the first 2 months, however, is very difficult to fix in rare cases when children are detected at 4-5 months, like Tyler. This is why he was meeting with Tyler today. There was not much time to work with if this was the case. He said liver transplants are usually the method of repair at this stage, but put me at ease because, "the liver and skin are the only organs that regenerate themselves, you don't need a perfect match, mothers can be good donors, and it is the best organ to transplant unlike the heart or other organs." I couldn't stop laughing on the way home, when I realized I was actually relieved after talking to him that it was only a liver transplant that Tyler might need and not some other type of transplant. So after being prepped for the worst...I said I read on the internet that stones sometimes come from being on an IV feeding tube. The UCSF heart doctors were supposed to talk to him and tell him all of this which apparently didn't happen. For that, Robin and I got to hear all about biliary atresia and liver transplants.

After finding out Tyler was on total parenteral nutrition (TPN), a method of feeding that bypasses the gastrointestinal tract, he quickly changed his notion of biliary artresia to TPN--a much better diagnosis. When fluids are given into a vein to provide most of the necessary nutrients the body needs, the persons biles sometimes don't function properly after receiving gastric feedings. The ultrasound shows that Tyler has a lot of "sludge" in his bile, expanded bile, that is basically poisoning his body. His bilirubin count is now a 9. So what do you do with TPN? 1. give a "draino" medication named after an oso, bear, called "orso.." to unclog the bile duct. If that doesn't work 2. inject it surgically to try to drain it. 3. Do a procedure similar to a cath. They started with #1, so he is on medicine. We will do labs in a week and meet with the great doctor in 2 weeks to see if he needs a surgerical procedure. They hope he doesn't since it gets complicated with his heart.

Well, we went from the biliary atresia notion and liver transplant solution to TPN and medication. We are hoping it works. Tonight his poop changed from all white, to white with big chalky-like strands of dark yellow. Hopefully the draino is working. The catheterization has been postponed. Dr. Rosenthal said Tyler isn't functioning very well without his liver. It is only organ with LIVE and EVIL as he explained; the heart comes secondary. I wonder what the heart specialists would think about that.

So why did I go through this. To realize it is out of my hands. To realize people have problems far greater than mine. There are a lot of syndromes that cause heart and liver failure, which makes a critical situation a very critical situation. To tell you to be an organ donor. I thought for a period today that Tyler would not just need a heart someday, but a liver today. To tell you that I am so grateful for men and women who dedicate their lives to medicine. When we were leaving, Sanjee was in the elevator and he said hello. I got to show him out miracle child. Who is Sanjee? A very special doctor because he revived Tyler by preforming CPR on his little heart for 30 minutes until he was placed on heart/lung bypass. It made my day to see him, say thank you and tell him that Tyler is here because of him.

WHAT A WEEK. I am hoping that my blog entries become less informative and full of more pictures. That indicates not much is happening, which we like these days. There is just so much to update and this is a journal for me as well of the sagas, blessings, highlights and lowlights of the McMillans.