It's hard to believe that all of this started almost a month ago. We haven't had a normal day in so long. At her worst, Sunley spent three or four days on oxygen all day and in my bed, only getting up to go potty. Even on 5L of oxygen, if she moved at all she would desat as low as the 40s. It was very scary for us, and it feels all like a blur. Her saturations shouldn't get below 70 or over 88, so it's a constant game of adjusting her oxygen support to keep her in range - absolutely a full time job. It doesn't help that technology still has a LONG way to go in getting accurate saturation levels. Those pulse oximeters can be so finicky! Thank you to everyone who texted, prayed, sent meals for us. We had plenty of help, and the load felt that much lighter. My mom asked if it would be helpful for her to come, and I don't think I even let her finish her sentence before I said YES! She arrived yesterday with her extra set of hands, so I know this week will be even easier. Our big two kids have been amazing troopers, and so incredibly compassionate and empathetic with their sister. I am very proud of them. Davis doesn't seem to care, as long as she gets fed ;)

We are crawling slowly and steadily back toward our normal. Sunley is doing much better than she was a couple weeks ago, and every day is just slightly better than the one before it. She still has to do oxygen to do any sort of movement at all, but when she desats, the numbers aren't quite as low as the were. Sometimes the oxygen keeps her from desatting at all. (When I say desat, I mean her oxygen saturations get below 70. Her normal range is 73-84)

I spoke to Sunley's cardiologist in Houston, and she does want to see her now instead of next March, like we originally planned. Our appointment is at the end of July. They'll do an echo and all the heart things, and we are praying that nothing has changed since her last appointment. Please pray with us that it is not time for her Fontan surgery. We absolutely want to wait another year. I think we are all a bit surprised how hard her body was hit by nothing more than a low fever and a runny nose. She only had symptoms for a few days, and they were so mild. So that's a bit alarming, and a good reminder for all of us that we were doing this whole germaphobe thing long before 2020, and we still need everyone around us to use caution when they are feeling sick. That used to be an easy conversation to have -- now it seems to be offensive and politically charged. How silly.

We are so ready to see our spunky girl on the tball field again with her big brother, but we know we need to be patient and let her body recover at its own pace. We've let her push herself (almost) as much as she wants, and we just add oxygen and let her choose how active she wants to be. But this girl has no stop button. Which makes me proud, but also has me watching closely. Go, Sunley Summit! (But you don't have to summit EVERYTHING).

Sunley has Hypoplastic Right Heart Syndrome. Specifically, her anatomy is no right ventricle, DILV/DOLV, TGA. She has had a PA Banding, atrial septostomy, Bidirectional Glenn, and a DKS procedure. We are expecting her to need a Fontan next.