So, long story but.... Ben has been sick since last May. Of and on fevers and times where he was so, so bad, (ER visits & hospitalizations), but mostly just really bad sinus/cold sxs that wouldn't quit. ENT tried everything they could think of and finally he had a CT of sinuses in January. It showed they were badly diseased. Surgery was scheduled and took place Feb 16, last Wednesday. Ben had a super major sinus surgery as well as having his adenoids out and tubes put in his ears. The surgeon said the sinuses were much worse than he thought and there were several parts he couldn't reach to scrape the bone down. He did the best he could. Also the adenoids were large so they were sent to pathology for tests. Recovery from the surgery was hard and Ben was not able to get off oxygen. So he was admitted where he stayed till Sunday. There were way scary times where he would de-sat to the 50's in an instant and spike fevers 104's. He'd gotten an infection while being in the hospital. But he did come home and has been doing ok. Getting more like himself though still sick.
Last night the lead Transplant Cardiologist called me herself. I knew something was up when she asked if I was driving, she said she needed to talk to me and didn't want me to freak out. (Like I am prone to that, right?) Anyway, I guess initial tests on the adenoids in pathology seemed ok-ish, but when they were looking at the tissues under the microscope it really didn't look good and so they ran tests. It was positive for one of two things (unfortunately this test isn't very conclusive). Posttransplant Lymphoproliferative Disease (PTLD) or Ebstein-Barr Virus (EBV), the first is essentially lymphoma, cancer. The second is also known as what causes mononucleosis (just imagine a tiny, immunosuppressed kid trying to fight mono!) but it also usually causes PTLD anyway. Here is some information about it if you care to read, it is lengthy but interesting if you like medical terminolgy.
I took Ben down today for a bunch of tests- a full body CT scan and abdomen ultrasound to see how advanced the condition is, (is it only near the adenoid region or all over his body, how the lymphnodes look and the size of his spleen and liver, all indicators of severity), as well as lots of blood tests to try to determine if it is PTLD or EBV. We won't get the blood results till maybe Monday or Tuesday (something to stew and worry about all weekend), but unfortunately the radiology tests showed enlarged lymphnodes all over his body, so what ever he has, he has it all over, not just where his adenoids were. I haven't heard what the spleen/liver looked like. Dr Everitt had me feel with my fingers enlarged lymphnodes she found in his groin, under his arms and his neck. I am to check them daily to see if they are getting bigger. For now his anti-rejection meds were decreased, in an effort to let his own immune system try to fight this. Danger there of course is his immune system could realize he has someone else's heart inside him and reject and attack it. Danger if you don't decrease meds is the infection will ruin the heart anyway.
At this point, none of the options sound good. We are trying to be hopeful, he really looks the same as usual (usual for Ben that is), and we have faith that what ever happens will be the Lord's will and for the best. Please keep Benny in your prayers. Thanks!
