This fluid retention issue seems to be the biggest stumbling block that we are facing right now. Hopefully if we can get this figured out we will be able to advance his feeds and get some good nutrition in him. He currently is at 50cc/hour of the Vivonex TEN and is handling things well. We are planning on getting his labs drawn again tomorrow.
Also, this past Friday, we noticed that Matthew's Jtube is now leaking from the opening. It's over a year old and looks like now it needs to be replaced. We heard from Matthew's surgical office and they told use that they will try and schedule the procedure while we are in Boston in November. We will probably have his gtube switched out the same time as well.