First off, I have a comment to make. One that some of you heard in person and some saw on Facebook. But after this evening, it's worth repeating. A 3-year-old who suddenly is getting 700 calories/day more than he is used to? SO LOUD and SO HYPER!!! I'm pretty sure Daniel is counting the seconds until he gets to leave for work tomorrow. It is utter insanity around here the last few days. Because Ethan being loud means Vivian has to be loud and Ethan running around and throwing things means Vivian has to do it... and so on.
That being said, boy, is it ever a relief to see the "volume delivered" screen on his pump and realize how many calories entered our little boy, without major effort on our part.
Ethan wears the NG tube all the time, for the simple reason that it's difficult/impossible to get a 3-year-old to sit still while someone sticks a tube down his nose to his stomach. So even though it's not in use all day, it's in him all the time. Then at night he's hooked up to more tubes which are connected to a small pump, which delivers his formula overnight.
Friday night sucked, to say the least. He wasn't used to the tubes and being tangled up, and he caught a cold and couldn't breathe well, so he was very restless. In the end, Vivian went to our room and I slept on the floor next to his bed. Between him being restless and needing to adjust the pump volume in the middle of the night, it was just easier. Not so comfortable, but easier.
I was pretty tired on Saturday, and kind of discouraged, but Saturday night went much better, with just a few times up in the middle of the night to detangle or comfort. And Ethan hasn't looked at me in over 48 hours and said "Mommy, tube out, please?", which is good, because that was the hardest thing to deal with.
The tube will have to be replaced every 2-3 weeks (sooner if it comes out on its own) and I'm going to give it a shot at replacing, since I've actually done similar things on animals (in my previous life as a scientist); but if it doesn't happen, then we'll go to the emergency room and make them do it.
Honestly, Ethan is doing great with this whole thing. After the first night in the hospital when he accidentally pulled out some of the tube, he's not messed with it or even seemed to notice it. And we were able to be out and about yesterday and go to church today and everything seemed normal.
I told a friend at church today that we're just viewing this as something similar to a broken bone in a cast. Annoying and uncomfortable and difficult, but temporary and necessary. The number on the scale is already creeping up a bit, which is amazing to see, and so far not nearly as bad as we thought it would be.
God is so good and so faithful. We've had so many wonderful people praying for us and sending us sweet messages and I know we wouldn't be in nearly as good of a place without all of them and God watching over us and Ethan.
Now I need to go get some rest- tomorrow is a day home alone with SUPER HYPER boy and his sidekick WAY TOO SMART FOR HER OWN GOOD girl :) Send chocolate.