+05.29.2007 < 542 days ago
in case you cant tell by the infrequency of the updates
im getting tired
we’re both tired
exhausted really
after awhile you get used to it
the doctor phone calls
the two hospitals
the double tours on the weekends
it seems weird NOT to go everyday
but man is it tiring
i’m not sure what it is about hospitals that make them so
maybe its the lighting
or the choice of wall art [which is 95% awful]
in other words
stress and related pains aside we’re fine.
anyway
the update
we’ll start with ms. elizabeth as shes the drama queen
they did a rectal biopsy on her on friday
and the results are that she doesn’t have Hirschprungs
which is like the worst good news ever
we are now back to position zero
although i guess its more like position 0.5
as one possibility of her obstruction has been eliminated
now theres only about a dozen to go through
they haven’t ruled out NEC,... yet
on a positive note
yesterday they stopped the blood thinners she was on
after the echo and the ultrasound showed that the clot was either completely gone
or so minor that they cant even detect it
shes still very swollen
and exercising our patience with all this waiting
which is basically what the doctors told us was the plan
before running into exploratory surgery
although the next step is most likely a laparotomy
and just to prove that im the positive one:
at least they are doing everything they can to make surgery not an option and they recognize that she couldnt handle it right now
which is really just me saying that they are all doing their jobs
now
for ms. amelia
Saturday was graduation day for her
she went from standard ventilator, skipped the CPAP, to nasal canula
which means shes breathing about 90% room air
on her own
im very happy about this development
alyssa is just worried
but amelia is holding her own
its weird to see her without the velcro mustache
you can actually see her face
[ill put pictures up soon i promise]
they started feeding her again
about 5cc’s every 6 hours
today should hopefully be her last day of contact isolation
so alyssa might actually get to hold her tonight
which im also VERY happy about
now
if we could just get amelia to teach her sister a thing or two
instead of showing off and rubbing her sisters face in it
maybe this is just be being delusional again
from all the caffeine and sleep deprivation
but
i feel like we’ve turned a little corner
and might be moving into more positive territory
im not sure where this feeling comes from
but its there
i can tell because i dont feel like crying or breaking things
all the time
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