email July 2, 2014
Prayer Warriors....God is working wonders with
Patrick!! We are FINALLY getting where we need to be....it is like a miracle
that Pastor Terry brought Patrick into church prayers on Sunday
and within the last 24 hours we are getting an appointment with NIH and CHOA!!
Thank you all for continuing prayers and the prayers of our church to give us a
little 'nudge!'
Chief of the division of Pediatric Hepatology/ GI at Children's Hospital of Atlanta will see Patrick for his liver (portal hypertension, maybe congenital
hepatic fibrosis). He wants us to have an MRI before we come in for the
appointment but wants us to get this done down in Atlanta rather than here.
It was funny how they told me that they would just rather prefer their
expertise in this area. So..if any of you know any cheap and nice places
to stay please let me know!
MUSC doctor wasn't giving up on
all his other symptoms so she kept pushing and we will also be getting an
appointment at the National Institute of Health with TRAPS expert in the undiagnosed area. Duke immunologists said they are not comfortable
with many of the treatments that NIH doctor would like to attempt with him so
he is happy to add Patrick into his clinic.
The immunologists also mentioned that Patrick
doesn't have pneumococcal antibodies (need to research this) that could mean an
antibody deficiency....NIH doctor wants to possibly do some treatments and
then repeat 23 additional tests that would be sent off to Mayo. They want
to try some sequencing (?) on him and even mentioned a possible empiric trial
with him (this would be at the onset of his fevers). He has had a fever
once every month since January....except in the month of April....they last for
5 days and range from 103-104.
The middle of this month Patrick will be getting some dental
surgery...the medicine and his condition have caused some dental issues that
the dentist doesn't feel comfortable performing in her office plus the
medicine/numbing agents she uses metabolize in his liver. It should be in
and out surgery .... depending on his platelet counts.
So ... a lot is going on right now....We have hit our 3 year
anniversary of the beginning of Patrick's illness so hopefully soon can put a
name with this!
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