It’s about 8:30am Monday, March 25. The night last night wasn’t great, but not our worst. They started cutting Lilyan’s ventilator settings back a bit and continued those slow changes through the night to encourage her lungs to try to work on their own. Once again, fighting against that fluid, is a constant challenge for her. Because of her trunk deformity, her chest cavity is far from normal anyway, so her lung capacity is diminished even on a good day. So that also makes this really challenging for her body.

But she did pretty well overnight. Scott and I slept a bit in turns, and while we didn’t get much, we think we got enough to get us through the day.

At about 5am, they decided to switch her ventilator over to CPAP settings, which will require a lot of work from her to breath on her own, and see how she will do. So far, she is doing fairly well with that and certainly better than yesterday. They are reducing her sedation in prep for possible extubation later and planning to step down to BiPAP first to kind of ease her into  full breathing on her own. There are some challenges with BiPAP (mask with significant pressure on her face, which will tend to make her feel, again, that she is suffocating), so we really don’t know what to expect.

Her routine chest X-ray was done at about 5:30 this morning, and that is still looking about the same. Fluid is there, but there is also air in her lungs, so the aggressive  attempts to rid her body of this fluid continue. And she really is getting rid of so much, but there’s still just a long way to go. If we get her breathing on her own and off her sedation, she will be able to to assist better with clearing her lungs through some healthy coughing, etc. As I’ve been typing this, she has had several pretty bad choking/coughing/suction episodes because of the fluid.

Good morning, X-ray techs.

One of the other big concerns now is this fever. It was up to 103 again this morning. We are still waiting on the newest culture results, but one test done yesterday (procalcitonin or PCT) indicated that sepsis is a possibility, so we are of course a bit worried about that. They did treat her yesterday, even while waiting for culture results, and we’ll just have to take this one step at a time.

Very early this morning, before the fluid in her lungs began pushing her to places of panic, again, she felt good enough to sit up and play a simple game on the iPad for just a little while. She quickly became exhausted, but this was another good thing to see.

We will let you know how extubation attempts go today. Please pray for our kids at home. Nolan’s anxiety is beginning to mount a bit for him as he misses us and is very worried about Lilyan, and Kathryn is showing signs of a UTI. I have talked to our urology nurse and she is working with our oldest daughter, Kristie, to tackle that for us.

As always, please ignore mistakes. Typing quickly and with about a quarter of a brain. More later.