Finally Home

We made it home on Sunday! Lily did great after the stent removal, but later Friday afternoon, her feeding tube started leaking around her skin. They didn't want to send us home until we fixed the problem. We tried a few different things and then on Saturday morning, put her normal G tube back in (she had a GJ in since the stent was placed) and thankfully that fixed the problem. They kept us Saturday night to make sure there was no more leaking. On Sunday, we packed up, got our discharge instructions, and took an uber to the bus station. We took a bus all the way to Bangor. Joe and the girls picked us up when we arrived at 6:30pm. It was a happy reunion! Thank you for your prayers, and please continue to pray as we try to get back into some routines. It's very tricky keeping Lily hooked up to her feeding tube/bag/accessories now that she's so mobile. Part of the problem is that she's back to more of a continuous feed schedule. Because she didn't have feeds going into her stomach (G tube) for 3 weeks, we have to go slow as we start to feed her that way again. The J tube was in so that her feeds could avoid her stomach and go straight to the jejunum. 

We have an appointment with OT in a couple weeks, and I can't wait to get going with them again. Hopefully we can advance her oral intake and start decreasing the amount she needs through the feeding tube.