This last week was very busy. Lots of appointments and a trip back to the OR for Nora’s port to be removed. Last week Thursday and today we met with Dr. C. He is very pleased with Nora’s progress thus far. He said the labs are looking great. Her ALT, AST, and alkaline phosphatase (which are all liver function tests) are within normal range. Her GGT (another test they watch closely) is still elevated but continuing to trend down. Just to make sure we had them check an ammonia level today and it was 35. However the lab still is terrible at drawing it, but not our problem anymore. Even though she is doing well and labs are good thus far we are only 37 days post op and Dr. C urged us to continue to be diligent in keeping her healthy. Last week they dropped her prednisone a little. They are dropping her prednisone more slowly than other liver transplant patients because her transplant was an ABO incompatible. Usually they get off these meds and a few others around 3 months but it all depends on how her labs are looking. Even though they dropped her dose last week, it really through off her sleep over the weekend. She was wide awake and ready to play in the middle of the night for a few nights in a row. Today we got the results of her ultrasound and X-ray from last week. The ultrasound still showed a clot but it is decreasing in size. We will follow up with hematology in 2 weeks. Her X-ray looked exactly as they wanted. During surgery they put a stent in her bile duct and she must have passed that sometime in the last few weeks, which is good. They want it to come out on its own. On Monday she had her port taken out. Hunger is one large side effect of prednisone. So on Monday Nora couldn’t eat from 5:30 am until after her surgery (we woke her about 3:30 pm). Surgery went well. They told us afterwards that she built up quite a tolerance for the pain and sedation meds in the hospital because they had to put her under with a full general anesthesia without a breathing tube for the removal. Before surgery they said they would try to keep her just lightly asleep but her tolerance didn’t allow that. She did great but was just very sleepy after. Over the weekend Nora’s NJ tube came out. It was getting loose but we knew it was coming out early this week so decided not to retape it. I may or may not have pulled it myself. She is taking all of her meds great! It makes our life so much easier that she is so good at her meds. Nora also started OT last week. We have the same OT as pre-transplant. We are not huge fans of her, especially after her lecturing us on an appropriate diet for Nora. (Um excuse me? I don’t think she knows what OTC is or how knowledgeable and health conscious we are. Not to mention, out of her scope of practice). However we are trying to be positive about it as it can only help Nora (even if mama PT disagrees with her assessment). We are so excited that Dr. C said Nora could go back to her music class this fall. In the next few weeks we continue to be very busy with appointments, labs, therapy, and music class! Have a great holiday weekend everyone!