20 days later, TPN is coming back

January 6 was Peter's last night of TPN... we hoped. Tomorrow night he'll start back on it again. He has been losing weight steadily since his surgery, which was good since he was overweight on TPN and fluids, but only good up to a point. His ideal weight is likely 47 to 48 pounds, but he is now 44 1/2 pounds and decidely skinny and bony... not just thin, but frankly bony.  It is normal to lose some weight when transitioning off TPN, but he is dropping too much weight too fast.  

The immediately apparent issues that have complicated Peter's success off TPN are unstable daily ostomy outputs that can vary from just under 600mL/day to over 1200mL/day and then the responsive action to take away his enteral feeds and place him on Pedialyte, which has considerably fewer calories than his formula.  He is now on six Imodium capsules a day, and some days it seems to help, other days it doesn't seem to do a thing.  At this point it is unclear whether the formula he is on needs to be substituted out for another one, or whether this is an issue with his bowel. As his ostomy does slow down considerably with Pedialyte, the output amount is likely due to the formula. We will be looking further into all of this over the next couple of weeks, perhaps going onto a different formula or substituting out some of the formula for something else. 

People have asked why he is on formula instead of real food.  The typical protocol in coming off TPN is to be on formula, as formula is more nutrient and calorie dense than real food, so a person can take in less formula than food. This gives the bowel time to gradually adapt to a more normal intestinal functioning.  Peter does eat some real food, so it is possible we might have success feeding him more real food in place of some of his formula, but he frankly doesn't eat enough to sustain without formula or TPN.  Unfortunately, with the reinstitution of TPN, we also know his appetite will go down.  It is a difficult catch to be on TPN - it can prevent or treat malnutrition, but it can also reduce the desire to eat.   Everyone has held out as long as possible in putting him back on TPN, but at this point we all agree that he needs to regain some of the lost weight and definitely not lose any more.  The goal is to still get back off TPN as soon as possible though.   

Peter is disappointed that he needs to go back on TPN, as are we, but he is only going to be on three nights a week and will likely go down to two nights a week once he gains a little of this lost weight back.  We are, however, happy that he will get back on Omegaven again, as he had to stop Omegaven once he stopped TPN.  We had tried enteral fish oil after he ended Omegaven and that did not fare well with his ostomy output, so Peter has not had the benefits of those great omega 3 fatty acids in the 20 days he's been off TPN.  We had a great break from the tedium of TPN set-up, but honestly, the last two weeks have been rather harried in keeping up with the dealings of his fluctuating high ostomy output: calculations, phone calls, emails, and boluses of Pedialyte, sometimes every half hour, in an effort to keep him off TPN.  Resuming TPN may be the less complicated option at this point.     

We decided to give Peter a "bonus" to restarting TPN by telling him we will have another celebration when he comes back off TPN.  He is already looking forward to it.  "Will I get to open more presents?" he asked tonight.  I just love the thought process of a six year old!