Hospital overview:

Today, Jesse had a checkup at the hospital. His appointment was at 2 p.m., but before hand, we met with his Great-Aunt Dorothy,  along with her two children, Stevie and Christopher, for lunch. We decided to eat at Chick-fil-A. Jesse enjoyed a chocolate milkshake with his Aunt Ange and enjoyed plenty of french fries dipped in Chick-fil-A sauce.

After lunch, we headed to his appointment. We were greeted by plenty of smiles from all the wonderfully helpful and caring nurses. Dr. Furuya went through the normal routine of weighing him, measuring him, and taking his temperature. Jesse lost a few ounces, weighing 16lbs 7.3oz.  His temperature was a bit elevated, but was re-checked twice and thankfully ended up being normal. We were told Jesse has a slight build-up of ascites, fluid in the belly, once again. The concern with the temperature being high is that there is a higher risk of infection with the fluid and could a pose a definite threat to Jesse if not treated immediately.

Jesse also had a new tube inserted and was not very happy about it. Uncle Seth was very upset with the nurse because it took longer than usual to get the tape on his face to hold the tube in place. After Jesse’s crying and fussing, the tape ended up not sticking well anyway. Jesse screamed so much, just from that one experience, that when Uncle Seth picked him up, he fell right asleep. We also met with the nutritionist who recommended Jesse stay on his feeding tube 23 hours every day now and that he can continue snacking on his favorite treats throughout the day.

Next in line for the day was an x-ray. They checked for proper tube placement, and thankfully it was situated perfectly. After that, he went for blood work. In the waiting room, a sweet little boy, about 5 years old, prayed for Jesse. What a sweet little boy! Then, Uncle Seth took him in the room and held him while he got blood taken and he did very well. We should have results within the next day or two regarding bilirubin, ammonia levels, etc.

Recap:

At the end of the day, we were told that Jesse’s PELD score got bumped up from 32 to 36. The doctors are hoping to increase the number to 40 by this weekend. 40 is the highest you can be on the transplant list. In the mean time, Nathaniel, Jesse’s uncle, will go through one more test to determine whether he is the perfect match for Jesse, and if so, Nathaniel will be able to donate a piece of his liver to Jesse.

Overall, Jesse is fairly stable but will be going in tomorrow (07.09.2010) for some albumin to reduce the fluid in his belly. His next checkup is next week. More updates to come.