December 5, 2015 (2 months after first)
Patrick had his second surgery today...thankfully his
varices/bands from before had healed but new varices had formed since his last
surgery in October. Therefore, these needed to be banded today.
During recovery he experienced some bleeding problems. It also took
longer than anticipated for him to come out of it. We will have to return
for surgery #3 in a few months. It appears that he will have to continue
to have the varices banded because of the possible bleeding issues.
Yesterday he was so excited to come to Duke and play games with
the doctors but this morning he became hesitant and upon being wheeled out he
burst into tears. The nurse said that he is now at that age where it is
all starting to make sense to him and he is aware of what is happening to his
body.
We are scheduled with NIH at the beginning of January. He
had this DNA blood sample drawn last week and sent back to them. She said
they do the test on site at NIH but they work it in to the schedule to test and
has been taking a few weeks to get back. If the results come back
positive it will be urgent that he begins therapy immediately, even before our
visit with them.
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