The 511 on Xavier
Greetings and hello to everyone.
Well, Praise God! Xavier was a champion today at the doctor!
He started out this morning being generally quiet about not eating. That's a big PTL!
He was calm and quiet during his ultrasound, so calm, in fact, that the sonographer did not have to rush. What generally takes :30 minutes went :45 because she could take her time. This was a minor miracle because Xavier was shirtless, a state he does not like and generally lets you hear about it.
The imaging was very clear and we got to see his internals in some detail. It's amazing how small his organs are and nearly inconceivable how tiny some of the duct work and piping are!
Before getting in to see the gastroenterologist, Xavier got weighed and measured. He weighed 5 pounds 1.1 ounces (2271 grams), and his length measured 17.3 inches (44 cm).
After this, we met with the gastroenterologist. It was disappointing that they did not have access to Xavier's records yet, so we had to fill her in "from the beginning." (the blog was a useful tool for numbers and dates). After collecting all we thought to tell her, the doctor left to find the resident gastroenterologist.
Dr. Shikha Sundaram, the resident gastroenterologist, after digesting all the notes taken, met with us. She explained there is a (very long) list of things that might be wrong with Xavier's liver. The one topping the list (and the most scary) is something called bilirubin atresia. This is a cascading scaring of the bilirubin tree within the liver.
The bilirubin tree is a tree of ever-branching vessels which infuse the liver. All the branches join into larger trunks leading up to the main trunk that feeds into the gall bladder. Scarring begins in the smallest branches, closing off those branches. This spreads into the larger branches, cascading all the way to the main trunk.
The only remedy for this problem is surgery, where the surgeon hunts down branches that are still open and then sews these ducts directly into the small intestine. This ensures bile can get to the intestine.
Dr. Sundaram is fairly sure Xavier does not have bilirubin atresia. She said she is 50-50 on her certainty. Both Rebecca and I have the strong sense Xavier does not have bilirubin atresia. The problem with bilirubin atresia is that it needs to be corrected within the first three months, which Xavier is just at the edge of. The reason for this is by this time, too many of the duct branches have scarred over for the surgery to do much good.
So, how do we know with better certainty about bilirubin atresia? A liver biopsy. Xavier is (tentatively) scheduled for one this Wednesday. The procedure will take about 5 minutes, but much more time will be required to put him under anesthesia, and do the ultrasound to find where the best place to push the needle to get to the liver. It also means Xavier will be spending the night at the hospital so they can watch his recovery.
The biopsy (the results of which will take three or four business days to get) will do one of three things. It will either completely show there is no bilirubin atresia in Xavier's liver, it can suggest there is no bilirubin atresia (but not conclusively throw it out as a possibility), or it can definitely show bilirubin atresia.
The middle, inconclusive result could suggest what is common with preemies who have TPN feeds (that's the vitamins and nutrients that were fed through Xavier's PICC line his first two weeks outside the womb). It is common for the TPN to encourage tiny crystals to form in the bile ducts, clogging them up. Basically, tiny gall stones. The cure for this condition is time. The liver will eventually clear them out.
These are the top two contenders for Xavier's liver problem, but there are another 298 plus possibilities.
In preparation for the surgery, more blood had to be drawn via a vein in Xavier's arm. It was here Xavier broke down a little, but who can blame him? It was interesting that it took two people to hold him down while the blood was drawn. Both the sonographer and the lab nurse were amazed by how much strength he has, especially for his size.
Great is our God, Who has not brought us this far to abandon us now. We thank you all for your prayers.