We have a plan!!!!! And we are heading home tomorrow!!!!!
Everyone here is in agreement that if the tube is working and Alex is tolerating feeds we are going to leave well enough alone! We all feel the bottom of the tube and know it is a change, but for now the tube is functioning correctly.
We have started antibiotics for the cellulitis around the tube. We will continue those at home.
Now for the bad news...Alex and I will be back here a week from today. Although Alex's autoimmune hepatitis labs came back negative, his liver numbers continue to rise. The GI team is concerned and feel that we need to know what is going on. The next step is a liver biopsy. It is not a major procedure. It is done under general anesthesia and a needle biopsy guided by ultrasound. It was decided to hold off until next week because Alex really struggles metabolically after anesthesia and everyone would prefer for Dr. Koenig to be here. It should be another short stay and hopefully will provide us with a lot of information.
We need to get some more labs as well as a liver ultrasound done before we can leave tomorrow.
Alex has been hysterical today! He loves "his girls" (his nurses and child life girls). He has run the halls, played, and worked. He has enjoyed every minute here because he has felt so good! The only heard part has been when the doctors have needed to exam the area surrounding the tube. I am so thankful that with the amount of time we spend here that he is so comfortable and free of fear. It is truly a blessing. I am so thankful to the staff here for embracing Alex and making him feel so loved and safe in what could be a scary place.