The big news is that Peter is now officially off TPN! In less than four months after his surgery in September, he has gone from 7 nights per week of TPN dependency to zero dependency on TPN! He is taking in almost 1300 ml of formula daily, along with 120 to 200 ml of yogurt and pureed baby foods, and about 120 to 250 of water a day. A great thing with Peter being six years old is that he has been able to understand why I am feeding him formula several times a day even though he doesn't care to drink it. He has been able to decide that he wants to be free from TPN and to understand that for him to accomplish that goal, he needs to drink the formula. We had a little party for him to celebrate his end of TPN and he was so excited. He decided that he wanted sugar cookies (reduced in sugar for him) and that they were to be shaped cookies, not drop cookies, and he wanted to help make them. He also wanted strawberries for his party. We then added some surprises for him with crepe paper streamers, a banner, a candle to blow out, and some unexpected gifts and cards. He had a wonderful time and the celebration gave him some well-deserved recognition for the effort he has put into coming off TPN.
Peter has been on TPN since April 2006. The most he was ever able to come off was three nights a week for a few months, and then the fistula started putting out huge volumes of output and he had to go back to 7 nights per week of TPN. It almost doesn't feel real that he is actually off TPN since we have been using it for so many years. I am posting some photos of what his nightly set-up on TPN was. We will miss the great health benefits that we know Omegaven gave to Peter, but will certainly not miss the twice-per-night changing out of the old Omegaven bottle for the new one and resetting of the pump. His nightly set-up now is just a little IV push medication, setting up his tube feedings, and hooking up his ostomy to a drainage bag. He, and we, are enjoying the freedom that comes with being off TPN.
Supplies needed to set up TPN and Omegaven. I forgot to include the 50mL bag of saline which we hang at 6am to "chase" the remainder of Omegaven down the IV tubing. Below are photos of what the set-up looks like after injecting the multivitamins and connecting the tubes.
Omegaven
This yellow bag is what the TPN looks like after the multivitamins have been added. This yellow bag and little pump are what is inside the maroon bag below.
This was Peter's nightly set-up with TPN, Omegaven, and enteral feeds. The tiny little white and teal pump and pink bag behind it are all that will be remaining on his IV pole, as they delivery his near-700 milliliters of enteral feedings overnight. The ostomy drainage bag is still there too, but hanging off the bottom of his bed. That will go away whenever the ileostomy gets surgically reversed.
Hopefully this is goodbye to TPN for good, but if not, we'll enjoy the freedom while it lasts!
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