It has been a couple of months since we’ve updated. Last post we were optimistic that Evelyn’s guts were moving in the right direction and that perhaps we would make progress on g-tube feedings and be back in the position to cut out TPN again. Unfortunately, she experienced a lot of stopping and starting with her feedings and with the beautiful, busy-ness of summer, we felt that to allow her to coast for a few months would give her guts more time to sort themselves out. Mid-summer she started to eat more by mouth, tolerating most everything she put in while still avoiding hard-to-digest foods, yet she still required TPN. She was maintaining a mediocre balance of nutrition and hydration; not great, but not awful. Our family was thankfully healthy throughout the last few months, so this was a break for us for sure.
Dr Mercer recommended starting a new medication called Gattex that was just recently approved for children by the FDA. In short, it is a synthetic hormone that healthy bowels produce to expand the absorbing abilities of the gut. Many folks with short or unhealthy bowels do not have or make enough of this hormone. The hope is over a few weeks time we should see a decrease in the amount of fluid loss from her intestine as well as an improvement in the nutrition absorption. We are hopeful that this will be the bridge Evee needs to cut out most if not all of her TPN while her guts are stable. We’re hoping her fluctuations will be less drastic when she gets ill as well. We will have to watch out for any signs of overgrowth that may cause obstruction.
So, we received approval from insurance relatively quickly and today was her first dose! We will see what time brings and hope that this helps her feel better over the long-run. May God’s will be done. Continue to remember us in prayer that God will continue to guide and keep us all in His care.