Since our last post it seemed that things were improving. Sam's port site was healing well and we were able to switch to a different huber needle for his port which seemed to irritate his skin less.
Last Sunday we changed out Sam's needle and dressing and the site looked the best that I have seen it since we began this whole ordeal. Yesterday (Saturday) I went to de-access Sam (take out the old needle) and as I was working to get the dressing off could see that the skin under the needle head looked discolored. As I got the needle out I realized that it was not discolored skin that I was seeing but the silicone on the top of his port. The skin in the middle of his port, about 1 cm around, was just gone.
Since Sam is completely dependent on his TPN and IV fluids, he had to have an IV placed yesterday to keep him hydrated. It did not go well. It took several attempts over the course of 5 hours to get an IV placed. In the process I think he was stuck at least 10 times and we blew three veins. his poor arms and legs look terrible. Since his TPN concentration is too strong to put through this type of IV we are just keeping him hydrated.
We were scheduled to go into surgery this morning to have his port removed, but we are now putting it off until tomorrow as there has been some disagreement as to what to replace the port with and when to do it. Our surgeon will be back on tomorrow so hopefully we can all come up with a plan that everyone can agree on.