Maddie had an eventful day today. Morning was taken up with an x-ray and an echo cardiogram. The doctors had discontinued a medication for her pulmonary hypertension earlier in the week, and the echo cardiogram was a follow up to see if her hypertension was still doing OK. It was a good echo, and they might start to wean her nitric oxide (another hypertension drug) in a few days.

They decided to extubate Maddie off of the ventilator around noon. They were going down to a CPAP, which is a little oxygen mask that fits around her nose. It's designed to give her just enough pressure to prevent her lungs from collapsing when she exhales. After all the activity of the morning, Maddie wasn't in the best shape at that point. She lasted about 2 hours on the CPAP before they put her back on the ventilator. She was oxygenating fine, but wasn't ventilating the CO2 well enough to continue.

It's hard not to see this as a set back, but it just turns out Maddie wasn't ready just yet. We're once again reminded that we're on Maddie's schedule here, and she will let us know when she's ready for the next step. The doctors want to be fairly aggressive at weaning her off the ventilator. The ultimate goal is to teach her to breath on her own, after all. We might try again after the weekend.

Anyways, she is resting now and doing fine. She even has her favorite nurse watching out for her tonight. Speaking of hospital staff, it turns out that all the doctors, fellows, and residents are all changing shifts on Monday. So Maddie will have a bunch of new folks looking after her. The new doctor coming on knows Maddie very very well, so we aren't worried about any discontinuity in her care (this is Luke writing, so I get to use fancy math terms). We are so thankful for all the doctors and how they have taken care of Madelyn over the last month. These folks are incredible people. As if keeping our daughter alive day to day wasn't enough, they've really stretched to make our lives comfortable. One doctor has cried with us on multiple occasions. One shared her museum tickets with our family. One is running a marathon this weekend and raising money for CDH families. Really? Who are these people? God is really using them in a cool way.