Yes, starting with next week’s shipment, she will only be getting fluids without nutritional additives and without Omegaven.
ONE MORE TIME!!!(click on me) listen while you read: NO MORE TPN!!!
Two and a half years ago she went off of TPN for the first time. She was growing enough in both in height and weight for her team to think she could stop her TPN(total parenteral nutrition, IV nutrition). She was off of TPN for 6 months that time.
Before her surgery to lose her ostomy, we put her back on to get her ready and fatten her up for surgery and keep her weight up during the recovery time while her reconnected bowel learned how to behave. That strategy worked and she did very well and for the next 2 plus years. But, she has done well....ON TPN.
This Wednesday we went in for clinic with Dr. Lo (the TPN guru at Children’s) and Ellie had gained enough weight and grown enough for the team to feel that it was time for her to come offof IV nutrition again. She will still be on IV hydration 7 nights a week, but no IV nutrition.
Those of you that have met Ellie have seen how she runs from place to place, swims all summer, dances from room to room and lives life on her toes. The heat of summer is not the time to decrease her IV hydration.
So we are now in a two month trial period away from the complex land of TPN. As with all things short gut we understand that TPN may come back to Ellie if she needs it, but for now this significant step is great and makes us think about the terrifying possibility of a night without the whirr of an IV pump coming through the monitor.
WHAT WERE WE THINKING?????
So no more soccer.
For now Ellie will continue to dance ballet, go to school (Kindergarten starts in September), take swimming lessons (at the Y!) and be a very typical 5 year old. And well, I am pretty happy about that. In the future, I think that she will rock T-ball as a left field daisy picker.
He has also decided that crawling is for sissies. I honestly think he started pulling himself to standing and cruising because we told him that Ellie started cruising at 7 months. A Month behind his sister Will started pulling himself up to standing and walking. Bring on the crash helmet.