Update

I got a call back from Lucy's GI yesterday. I was totally surprised to hear from him, thinking he had forgotten us before the holidays.
I updated him with where we have gotten on the feeding pump. So far we are at 43cc's an hour and 26 cal concentration. She is having some chronic pain- mostly her neck, stomach, head, and back- but its brief and doesn't seem to slow her down. We discussed continuing to move her up just 1 cc every 4 or 5 days so that we could get those extra calories in and maybe if we are lucky, to allow Lucy some time off the pump in a day. This might be a little overly optimistic but I don't see the harm in trying.
Dr. G would like to hold off on the GJ tube for now. His major concern here is that getting a GJ tube would mean submitting to anesthesia at least 3 times a year. The GJ has to be replaced every few months and it must be placed under sedation. Dr. G is concerned that anytime Lucy goes under anesthesia there is a such a large risk of complication as well as major setbacks in her overall GI function. I can completely see the point he is making here. It was a concern of mine as well after watching Lu struggle so badly after her last sedation. Right now the G tube is giving her just about what she requires so we may have a few more months to a year before a GJ tube is an absolute necessity (barring anymore unforeseen crises that lead to further setbacks for her).
Additionally, I let Dr. G in on the news that our medical equipment supplier was able to give us an additional shipment of the Neocate 1+ that was scheduled to be discontinued December 15th. This is great because it gives us so much more time to trial out a new formula. So, at the beginning of the new year we will begin trialing Elecare in the hopes she will do just fine with it. If not, we will have more of the 1+ here to go back to while we sort out where to go next.
Thank you so much for checking in on Lu! I will update later with a post for Christmas! I hope everyone is enjoying the season!! We love you all!