Our weekend started off great with a long awaited visit
from the gastro team on Friday. After their initial consult some
changes were made that resulted in a great weekend for Harper. They've
determined that she has severe reflux issues, so they increased her
Prevacid dosage and changed her formula from the Enfamil Gentlease to
Elecare. As far as her feeding goes, progress was made this weekend...
Her tube feedings have been sped up to go over an hour and a half, and
on Friday she took 12 cc's orally. She didn't get another try until
Sunday afternoon, and she decided to really show off and take 50 cc's in
just ten minutes! Everyone was so excited that they wrote orders for
her to be offered a bottle at every feed from now on, and our nurse said
that the g-tube surgery may be put on hold if she continued to do so
well. However, her 6:00 feed did not go so well and she only took 10
cc's and grew very frustrated with the bottle and the pacifier.
Tomorrow (Monday) the GI team will be back in to discuss our options.
If they decide to go ahead with the plan and insert a g-tube, the
question will be when and where. There is not currently anyone here in
Wilmington to perform the surgery. There is a slight possibility that a
surgeon from Chapel Hill could come here and do the operation, but
apparently that involves a lot of hospital politics. The other option
is to transfer us back to Duke since they have all of her records and we
are established and known there. With the surgery we would be looking
at roughly a week or so of recovery for Harper and training on her
equipment for us, then a home healthcare nurse to help us manage her
care at home as well as physical and speech/occupational therapy in our
home.
A lot of big decisions will be made this week to determine what will be
best for Harper and our family, so we appreciate you praying with us...
As we have been learning, let us not be afraid to pray boldly and with
confidence! We know He hears and answers, and is using Harper to bring
glory to His name... Thank you always for your support, encouragement,
and prayers!
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