My apologies for not posting in a while- here's a long overdue update on what's been happening.
Unfortunately Tyler has been losing weight over the past few months. While it's not surprising given his inability to absorb fat, this downward trend is not good. We are hoping that he can gain some of the weight back but his little body just doesn't absorb like yours and mine does. This is from his liver not working as it should. There is a possibility that he will have to get an NG tube placed, they would like to discuss this at our next clinic visit. I am really hoping he has gained atleast a pound or two back, to avoid having to go this route. Tyler had one of these tubes as a baby and it was not pleasant.
When the liver transplant coordinator nurse called last week to discuss his weight loss, she mentioned that they got a liver offer for Tyler the week of Christmas. Unfortunately, it wasn't a suitable liver. They have access to the donor labs, cause of death, etc., and based on the factors, it just wasn't a 'good liver'. It gives me a little assurance though that his time is coming, or at least we pray so.
Today I received another call from his liver transplant nurse. She called to go over his recent blood lab results. His liver enzymes are higher than normal, but nothing alarming. However, the concern at stake now is that the routine lab test that they give every couple of months to screen for cancer, called an Alpha-1-Fetaprotein tumor blood test, came back with an abnormal result. He had a concerning jump in his AFP level. So they would like to do an ultrasound of his liver as soon as they can, to see if there is an abnormality in cells or lesions on his liver. We won't know anything until the imaging is complete. They are going to schedule this and get back to me as to when it will take place. Until then, I am asking any and all prayer warriors to please keep Tyler close in prayer. I haven't shared any of these lab findings with him, because he has enough on his plate to contend with.
I will give another update as soon as we get more answers and info.
#TylerStrong
