Thursday's test results showed even higher levels of AST and ALT. Today we had an ultrasound of his liver and we will hopefully have results tomorrow. We are still waiting for 1) results on CMV and EBV 2) results on rare metabolic disorders that are tested during the PKU screening and 3) New tests that were rescheduled for next week after 1) and 2). We waited on the new tests because Jason can only have 16mL of blood drawn every 14 days. As of today, they've taken 10mL. The remaining tests need 5mL, which only leaves 1mL for emergencies. Some of the tests will not need to be run based on the ultrasound and PKU test results.
He is holding steady at 8lbs 1oz.
Our next appointment is Tuesday morning.
I'm trying to not be anxious or worry, but that is almost impossible. I'm guilty of imagining worst case scenarios. But I would like to end with some positives: We've been able to rule out muscular dystrophy! And when I went in to the imaging lab to make the appointment, they could see me right away. And finally, the urine collections have been funny. He needed a sterile sample, so the nurses needed to use a catheter. He decided to not wait for them and went right around the tube into the vial. And for today's sample, they stuck a U bag to him. And not only did it not work, the sample magically leaked out of the diaper all over the ultrasound table. Our second and last chance to collect ended up in his car seat. It ended up okay because the urine needed to be sampled at the same time as one of the other tests that was postponed (and could only be drawn at the children's hospital).
**Edited to add: ultrasound NORMAL!
Jason doesn't act like a sick baby. He acts completely normal if not extra hungry! He is alert and active and sleeps normally too. The elevated enzyme levels are so mysterious!
