New Normal

This week may be the most difficult so far - not for Henry, but for Paige and I. It was time for me to return to the office on Tuesday, if only for a few days this week. Paige came back to Topeka with me Monday evening to get her car, see her kitty, and to sleep in her own bed for a night. I think that was difficult for both of us, in our own ways, to be so far away from Henry, but we have complete trust in the people at Children's Mercy. As they have told us each night, it's OK for us to rest, and no news is good news.

For this week, I am at work in Topeka until Thursday and will be back up in Kansas City on Friday. The plan is for me to work from the hospital on Friday, if Henry lets me. Based on the past couple of days he may not let me, though, but for all the best reasons. On Tuesday, they pulled Henry's feeding tube back from an NJ-tube to an NG-tube, meaning it is now in his stomach. They also continued to lower the rate of flow in his cannula, and he spent much of Tuesday at the lowest setting. 

On Wednesday, while Paige was back in Topeka for some appointments, we received some more good news, courtesy of Nana:

Henry is now off of the high-flow cannula! They will monitor him overnight to make sure he maintains good vitals and that he doesn't need a small amount of oxygen. His breathing is the last big step before he is eligible to move out of the PICU and up to the recovery floor.

But like a good only child, I think Henry wants more, and he wants it now. With his feeding tube in his stomach, he began bolus feeds Wednesday afternoon. He'll be getting more milk dripped in for a couple of hours at a time, with an hour or so break in between, in order to start building toward a more normal feeding schedule. If he is really good and finishes all of that, we might even try a bottle on Thursday! 

I do want to thank everyone reading for following us on our little adventure. As Paige and I try to catch our own breaths, you may find the length of time in between updates will vary. Try not to worry, as it is most likely poor mom and dad feeling a bit tired. And please stick with us! Even if we haven't heard it directly, we certainly feel your support. With any luck, we will soon clear the first stage of our journey and bring Henry home.