Email September 11, 2014
The liver doctor at Duke agreed with the doctors in Atlanta. Duke feels the endoscopy and banding of the varices should be performed as soon as possible. She wants to do the endoscopy and while she is in there band if needed whereas Atlanta wants to see where the banding needs to be done and then come in another time and band. She mentioned the high possibilities of ruptures while we are at home and would much rather us get him in to have this done to avoid this.
She had put him on the schedule to discuss with the board tomorrow again where she wants to discuss him having the surgery on his portal vein. The clot he has in his portal vein won't go away with medicine. Right now his body is accommodating for this lack of blood flow but it also is putting a toll on his body and could have a high possibility of long term effects on his liver.
We also met with the hematology/oncology team. They feel that MUSC has been thorough and does not feel he is having any type of blood issues (except platelets). His platelets dropped 40,000 since a month ago but still feel it is more related to the enlarged spleen and portal hypertension. They said Patrick doesn't fit the factor 5 leiden profile and they don't normally run this on children but still worth seeing the results. He did not fit the criteria other than family history and it is not enough to go on. They also are running another blood test to see how his bone marrow is functioning despite the bone marrow test....it wouldn't have shown up on this? It is rare and not likely it will come back positive but is just one more thing to rule out. We need to continue with a hematology/ oncology doctor to just keep monitoring his blood levels.
Our biggest decision now is to figure out where we want to have the surgery done so pray for our decision.
He slept halfway through the first appointment and halfway through the second appointment - 4 hours! And then slept the whole ride home! We still managed to get him to bed at 9.
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