TPN

Two weeks ago, we checked Charlie into the hospital to embark on our newest feeding adventure: TPN (total parenteral nutrition). This was the most difficult decision we have come to for him and one that is still causing me great anxiety. I did not anticipate the level of anxiety I would continue to have even after we learned the ins and outs and came home.

TPN is IV nutrition. Charlie is still receiving feeds through his jejunostomy tube but he is getting fed through an IV at night for supplementation. He wasn't getting enough calories through his j-tube and he when he was sick, it set him so far back that we were never able to make any progress and his nutritional status was suffering because of it (not to mention skin breakdown and pure misery for weeks surrounding any illness). TPN involves a central line. This can be placed in the chest or the arm but both go to the heart, versus a regular IV which is just in a vein. Charlie got a PICC line (in his arm) until we figure out whether this is going to be a long term solution or just a bridge. The primary risks with TPN are liver damage and, more importantly, sepsis and infection. Hence, my intense anxiety and paranoia surrounding this decision. Because the line is a direct connection to his heart, it must stay completely clean and dry. He has a dressing covering the site at all times, which is changed by a nurse once a week. We have to take a lot of precautions (forget living the "natural" life, we are now a household of alcohol swabs, Clorox wipes, and hand sanitizer) to ensure that we prepare his TPN bag in a sterile environment and fashion and minimize contamination when we hook up the IV at night. I've never been so paranoid about sterilization and hand sanitizing as I am now (I was never a mother who cleaned pacifiers after every fall on the floor). He gets labs taken every week and they monitor the formulation of the TPN carefully. This has certainly turned us upside down. One of us has to be here every night to prepare the TPN and hook him up, he can't be left with anyone other than us or a nurse (when TPN is running), fevers take on a whole new dimension, and we have to do all of this at a pretty specific time of night. So...basically, we are going to have to get creative with date nights at home. We are adjusting to our new normal and trying to take his cues instead of falling prey to our own insecurities and fears (one thing I've learned from parenting complex children is that we parents project a lot of our own issues on our kids...kids are a lot more resilient than adults)--Charlie seems completely unbothered by this turn of events.

The good news? In 2 weeks, he has gained nearly 3 pounds! This is a major accomplishment for a guy who hadn't gained anything in 8 months.