July 6th, 2020

Hello! An update from the Ev perspective:

In March, Evee had healed enough from her surgery to start night-time drips through her new j-tube; however, each time we tried to start, she didn’t seem to tolerate it. At her next appointment, Dr Mercer figured either she needed more time to heal, or her intestines had not restarted in the right mode, so we decided as a team to not rush it. Thankfully, she slowly started eating orally and continued doing quite well, eating and drinking pretty much anything she wanted while tapering off of IV dependence. Thankfully, she slowly needed less and less TPN, then less hydration, and has been totally off of IV fluids for nearly two months now! She’s had minor setbacks, but has recovered with just electrolyte supplement through her g-tube.

The only negative thing we can say has been that Evee’s j-tube site slowly reddened more and more, became increasingly uncomfortable and leaked quite often. We tried several rounds of oral antibiotics as well as creams, but they did not help. She had the tube switched out to see if perhaps putting in a fresh tube without any stitches would help the infection/irritation. Over the next week, it didn’t improve. We began wondering about trying a different tubing material and it seemed to help; however, the site continued to leak so much and so often that we decided that since it hasn’t been as useful as we’d hoped, we might as well pull it out completely and let it seal up. It has been a rollercoaster of closing and reopening again with the tides of how her bowels are doing, but overall we’re thankful it is no longer infected and seems to be slowly but surely heading in the right direction.

Some exciting news: we have moved again! Because we came to a point in her care that we realized that we have done all we can to help her from a physical standpoint besides treating symptoms, it became clear that our time in Omaha was drawing to a close. Ev has always ridden a delicate balance, and we will have to continue to ride the ups and downs as they come, taking it day by day.

With this in mind, we realized we also longed to be with family and friends again, so our family moved to the Minneapolis area in late May, where we’ll continue to receive remote-but-still-close care from Omaha, have a Children’s hospital close by for acute care, and also nourish the social and spiritual aspects of our family life. We’re so grateful to have had our time in Nebraska; we’ve grown closer as a family, met new friends that we might never have met, and learned more about Ev in that we can be confident we have tried our utmost to make her quality of life as best it can be. She may not have the same day to day life as others, but her day to day has become much more tolerable and has improved greatly. As we begin yet a new chapter in our lives, please continue to remember us in your prayers, that God will continue to bless and keep us all in His care!