One week down...

And, we're down.

We've been doing this g-tube feeding now, for a week. It's difficult. It's painful. It's discouraging.

We are supposed to do 4 bolus's and a 12hr feed over night. The bolus's need to be 120ml over an hour. However, if he gags and retches, we are supposed to pause the pump, and turn him on his side. We check to see if there is any gas build up. We comfort him, and then continue on with the feed. Sometimes, by the time we are finished with a feed, it's time to start the next one.
And, if his tummy gets too full, too fast, he not only gets a lot of gas, but then has diarrhea. And with Diarrhea comes diaper rash.
Because Henry doesn't have much range of motion with his arms... when he cries, he moves his arms and fists up and down on his belly... almost dislodging his button. I have it taped down so that he can't accidentally rip it out.

He has been happier the last two days. But he's also been low on his tube feeds. About 200ml short.

I'm trying to stay positive. I'm trying to keep my attitude in check.

I feel like we're all trapped in this cycle of feedings. By the time we finish one, it's time to start another. What if I need to go tot the supermarket? What about all of Henry's appointments? How in the world are we going to get him all of the nourishment that he needs, if the g-tube doesn't work?

He's sleeping now. He's had a good day.
I will be grateful for that. And tomorrow, we'll try to get more calories into him, without pushing it too hard.

I will 'take it easy' and try to find some time and energy to play games with the big kids, before winter break finally ends.