(It is okay at this point to stop reading, stand up, and do a little happy No TPN dance. It's like the poop dance, just better.)
Ellie had her first clinic appointment in two months yesterday at Children's. Even though we were anxious about her weight, after a round of nasty colds and mystery ostomy dumps over the last few weeks, she still managed to gain 500 grams (about 1.1 pounds) and grew an inch and half.
So after a the usual round of unconventional horse trading, bargaining and negotiation with the doctors pushing to be aggressive and me pushing to be conservative, we worked it out that as of December 1, our weekly shipment of TPN would no longer include TPN and that she would move on to seven nights a week of D10, (10% dextrose solution) to keep her hydrated and give her a tiny amount of sugar. I insisted that we start this after next week's holiday. I just didn't want to run the risk of anything going wrong and then spending the holiday weekend at "The Inn" with a skeleton crew of doctors and nurses piecing things together. No thank you!
This is huge news for a kid with a high ostomy and a small personal victory for us. The doctors that were pushing for these big changes yesterday were the same doctors that we fought with in 2006 because they disagreed on the use of an ostomy to resolve Ellie dilated bowel. They firmly believed that this approach could not work, that she would have constant issues with hydration, mineral balance and skin breakdown. They essentially told us that she wouldn't grow or thrive with an ostomy. And would never come off of TPN.
All of this is nerve wracking for Gib and me. We have seen lots of kids go off TPN and then need it again and had their parents be crushed by this step backwards. We are going into this as another experiment with Ellie. We know that it may not work and she may lose weight and need TPN again. We are cool with that. Really.
We won't be devastated if she needs TPN again. It really won't change our daily routine all that much- we are just down to one IV pump a night instead of the two that we have on TPN nights now. This is all easy to say right now but we'll see we feel if it happens. We also know that when we do reconnect her bowels, she will probably need to go back on TPN while her intestines learn to work together.
Omegaven guru, she will check in on our girl and drop off a large bag full of omegaven for the month ahead. Yesterday she dropped it off as usual and then after the changes to Ellie's TPN were decided, a nurse came back in and grabbed the bag of omegaven saying, "you won't be needing this, I guess."
We are going to have one of our clinical calls with our nutrition team at NutriThrive next week to talk about vitamins, minerals, fats and all the fun stuff that we have to worry about now that she is off of TPN. And now we also need to start looking into fish oil suppliments, because no more TPN also means no more white gold, Omegaven.
All in all we are very excited, and can't believe this is finally happening. But, to keep ourselves grounded we would like to invite you all in embrace a phrase with us: