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!