On 12/28, we were officially denied payment for the TPN process. I discussed with the Dr about me paying for it and we decided to go ahead and start it, the intent being to just use it for a few weeks (hopefully) until we could get another visit with the surgeon in Atlanta. My thought process was any weight gain would be in her benefit.
Dr Mark had also contacted the surgeon and one of his requirements was that she be able to walk up a flight of stairs. When we left his office, we attempted to do the stairs at the hospital… She made it up a full flight.. YIPPEE!! though it was not very pretty, she stumbled a couple times and that was from issues getting the foot high enough. It gave us something else to work on and I called Amy (PT) and let her know what we needed to focus on.
Tuesday, Jan 2nd, the supplies arrived and Danielle, our nurse came by later and installed the infusion access device into Lyn’s Port. That has to be changed weekly and can only be accessed by a nurse. She then proceeded to teach me how to prepare the infusion bag (it requires adding 2 syringes of vitamins etc… one which requires mixing), how to hook up the pump and prime it and then how to properly connect it to, and remove it from her in the morning.
It has now been almost a week and no real issues. I feel comfortable with the process and it goes reasonably quick. I usually prepare the bag around 2pm and and then hook her up about 3:00. It runs for 16 hours so I shut it off and disconnect her around 7am.