Friday, September 24, 2010


More medical terms are worming their way into my house. They are very good at this, they usually hitchhike though the back door with me on coming home from a doctor's appointment. Sometime, as was the case yesterday, they sneak in over the telephone wires.
The pediatrician called in the afternoon to go over the labs with me. Tomas' CBC was normal. His ANC was a stellar 2300.  That makes two great CBCs in a row, which is wonderful. Next came a pause from the pedi, then, "We need to discuss his LFTs."
Well, ok, but what is an LFT? Liver function tests. CBC is normal, ANC is normal, LFTs are not. Someone please make this alphabet scramble STOP!
Up until yesterday the docs were only checking 2 of the 4 LFTs and they are the ones that had quadrupled on Wed. Yesterday, one of the two went slightly down, but is still roughly 5 times what it should be, and the second climbed even higher than before, now 8 times the normal level. This time they checked a third, one that measures bile duct damage, and it was much higher than it should be.
I asked if this could be residual damage from the gallbladder surgery, but he said we were too far out from the surgery and that the 3rd test in particular is one of those labs that should just NOT be elevated. That makes it crystal clear that something is wrong with his liver.
After consulting with hem/onc the docs now want an MRI before the biopsy. When Tomas was in NICU those docs attempted a liver biopsy but were unable to get the needle in due to the excessive amount of blood vessels around the liver. This time around they want to make sure there is even a possibility of getting the needle in, and an MRI might show some of the bile duct damage they are looking for. I thought the precaution was unnecessary, since it meant going under general twice - once for the MRI and again for the biopsy, and especially because Tomas had no trouble with the bone marrow biopsy (unless you count the atropene and bagging, but that would happen no matter what procedure they'd have done and is exactly why I want to avoid as much anesthesia as possible).
But the hematologist told me this is different from the bone marrow biopsy in that the risk for bleeding is significantly higher with an organ biopsy, and she wold feel much more comfortable with the MRI first. So be it. Next up, an MRI, followed closely by the biopsy. 
Also, during the hem/onc aptt., she told me that she still feels like there is something going on with his immune system that is separate from the liver issue. She said, "As much as I hate to give him more than one diagnosis ..." Ugh...really? I am running out of brain cells people!
Because of all the anesthesia issues any procedure will need to be at the main children's hospital campus in Dallas, so just waiting on scheduling at this point.
As a lovely distraction, my brother in law is visiting this weekend from Utah. He hasn't seen Tomas yet, and the girls are so excited. We should have a wonderful time.


  1. I can only try tonimagine how you feel. I get frustrated from just reading your blog and asking God when are there going to some answers?

    I truly, truly mean it...if there is anything you need or I can do let me know.