Update; the good and the bad

Another bad and good update from Dr. Anselmo today! He came in to visit and check up on how everything was going.. He even asked if I've gone home this entire him we've been here. He told me I needed to, for my sanity at least. Haha. So, first thing's first, he is very impressed by how much softer Faye's belly has gotten. At this point though, we are hoping it does stay soft and doesn't get bigger or harder. Especially because she has been NPO (nothing oral) for a week in a half now, only on TPN and lipids (nutrients) through IV. My impression at first was if she's not eating, there was no way Chyle can leak, but I was informed otherwise. The GI team the other day did tell me that it is still possible for her to leak Chyle still. The Octreotide and being NPO only helps slow down the flow of Chyle, your lymphatic system constantly produces chyle? (Not sure how that works)

Anyways, so Dr. Anselmo is optimistic that her Chylous Ascites will go away once the duct seals. He also told me that he believes that she mostly has Chylous Ascites;

"True chylous ascites is defined as the presence of ascitic fluid with high fat (triglyceride) content, usually higher than 110 mg/dL."

because 97% of the fluid they drained in her belly were all triglycerides;

"Triglycerides are a type of fat in the bloodstream and fat tissue."

He also said that even though the liver biopsy showed that she had Fibrosis;

"Repeated damage and inflammation of the liver can lead to scarring, known as fibrosis. Fibrous strands develop where the liver has tried to repair and protect injured tissue.If the cause of the damage is removed, fibrosis can be reversed. However if damage continues, further scarring will occur and the liver will start to lose function."

But he said when he performed on her, he said her liver didn't look that damaged at all. Which is a good thing because her liver function and everything looks very good to compared to before her Kasai. He said, "Looks like her Kasai and liver is pretty much secondary at this point." Which is good, one less thing to worry about as of now.

So the bad news is, if her belly does get big and hard again, he is considering doing a procedure to find out where the leak is in her lymphatic system. With that procedure though, the success rate is very low. But he didn't want to discuss something like that until we see how her belly progress does in the next week.

And the good news is, even if we do have to wait to the 6 week mark before feeding her again and making sure the duct is sealed, he may still send us home! He said that he is going to consider sending us home on the TPN (IV nutrients) with Octreotide in the liquids. He said he's done this before, so he had no problem with it at all. With that, we will just have weekly visits with him so he can monitor her belly progress and he'll let us know what to do from there.

But he did say that we will definitely have to wait another week to see how her belly is, especially because it hasn't even been 2 weeks yet. We pretty much are going to take things slow with this one. We don't want to do anymore damaged and have to back track our progress. So, let's see what the next week holds for us!

Here are pictures of Faye today. Do you think her stomachs better?

Holding her PICC