This has been the longest week.
We met with the pediatric GI specialist this morning.
He was able to rule out the majority of viral, metabolic, genetic and hormonal causes.
There were a few tests that we were apprehensive about, and are happy to know that they are no longer possibilities.
Some other good news, Weston gained 4oz since Monday. He is now 8lbs 14oz. Yea!!
So basically Dr. Z said that we are still looking at it either being Biliary Atresia or idiopathic.
Biliary Atresia is a congenital defect in the liver's bile duct structures not allowing the liver to drain bile. As a result, the bile backs sits in the liver, and it develops cirrhosis.Children with this condition must have surgery to try to correct the problem. While the surgery is usually successful when done early in life, it is a huge procedure with a long recovery. Unfortunately, a large number of these children still end up needing a liver transplant at some point in their lives.
Idiopathic means they have no idea what is causing the liver to be inflamed. Most idiopathic cases resolve on their own and the kids usually end up doing ok without long term complications.
Of course, we are hoping for idiopathic.
The doctor said his liver was slightly enlarged, but soft which is a good sign. He said cases of Biliary Atresia usually present with a very hard liver. His spleen was normal and not enlarged, another good sign.
He had liver function tests drawn today. If I am remembering correctly (because I did not have the previous results in front of me), his billiruben levels have gone down a bit; but some other levels (ALT/AST) did go up. I don't know what this means. If they had improved significantly, we would have been able to delay the testing...
On Monday, Weston has to have a scan done where they inject a dye and watch to see if it follows the correct pathway that bile should from the liver to the small intestine. In order to prepare for this test, he has to take a medication twice a day to help stimulate bile production, in addition to his new vitamin. Both of these medications stink and make MY stomach turn just smelling them...I feel so bad that he has to take them.
We are also preparing ourselves for the high probability that he will have to have a liver biopsy and/or small operation to look at his gallbladder and its function.
As you can imagine, not having any answers has been absolute pure hell for Billy and I. Speculating "if it is this, then this horrible complication could arise", has been torturing us.
I asked the doctor about his gut feeling/instinct on Weston's outcome; if he felt it was going to be detrimental.
He of course could not guarantee anything, but did feel instinctively that this issue would not result in a detrimental outcome.
All we can do at this point is pray that it is not Biliary Atresia, and that he continues to be healthy otherwise and gain weight appropriately.
2 comments:
Keeping fingers crossed and prayers coming that Monday's appointment will show more GOOD news.
PawPaw and MeeMaw
So many people have him in their prayers. I know he will be doing fine.
Nana
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