Ethan's Up and Down Day...

My last post focused largely on our first Thanksgiving with the kids, so I also wanted to write a quick post about how Ethan was doing. I'm writing this off the notes that Lisa took throughout the day, so you'll here her "voice" creep in, making things clearer, shorter, and more understandable, thank goodness.

Ethan was super fussy this morning and working very hard at breathing. His CO2 was 120, then 109. His heart rate was in the 200's again, and he probably would have had a fever if they hadn't given him Tylenol.

After that, they gave him chloral hydrate to sedate him a little so that he could relax and breathe. He was also due to go off the heliox, but they left it on full time for today. His breathing treatments went from every six hours to every hour to help support him.

Once that was put into place, his CO2 at noon was 80. To help with future weaning off of heliox, he was changed to a full 10mg dose of steroids every day. They also reduced the amount of fluid/milk he's getting to help keep his lungs dry.

With him not having a very good day today, we held off of finger feedings, breast feedings, and other NNSEs. We still held him most of the day, which for me, does a world of good.

In the end, we are still trying to find that right amount of support for him so that he can grow new lung tissue and to eventually breathe on his own. The trick is that "right amount" changes from day to day. All we try to do is look at Ethan in the moment and continue to adjust as needed. I'm proud of him and we'll make it through all of this...