Wednesday we head to the hospital (Georgetown) with Levi. It’s time for a MRI and Biopsy to see how his liver is doing. He has been so well since we started the Rifampin, (antibiotic) I’m feeling extra anxiety about sedating him for the procedure. I hate seeing him hooked up to all those monitors and limp in the hospital bed. I imagine that if he could vocalize his thoughts at this age he would say, “why did you let them do this to me, mom?” Ugh – it saddens me so and as you can tell, I feel a lot of guilt.
This MRI and Biopsy will determine the state of his liver – the level of progression of his disease. It will also tell us whether there is C. I can’t even write the word.
What has been determined, in the mean time, is that Levi has NO Bile Salt Export Pump protein (BSEP) in his liver. This was confirmed by the dye test and means he is PFIC2. Because the clinical trial requires protein, even non functioning protein, Levi is ineligible for the trial. We are pretty crushed and I’d be lying if I said I didn’t shed tears over this disappointing news. We were counting on this to prevent the need for transplant so we aren’t quite sure what the next steps are, we know we will get answers Wednesday.
If you are up for praying, here are some things you can pray for:
1. No C and TIME
2. No complications with the procedure – that he is comfortable before and recovers quickly
3. Another trial we can participate in
4. Discernment for our medical team and for us
5. That we would be filled with the holy spirit during our visit so we can be calm for our baby
Thank you again for all your prayers. I will never stop thanking you!