Today has been a little up and down. In situations like this, perspective shifts a bit. Teensy steps forward can feel like huge victories, and teensy steps back can feel like huge blows. And the rest of the world fades way into the background somewhere.

After her first dose of Lasix this morning, Lilyan’s body dumped 300 ml of fluid by the one-hour mark, which made us want to have a party.  The ICU team rounded soon after that. They were still concerned that she can’t do any breathing on her own and the ventilator is having to do all of the work. They also seemed to think it was necessary to remind us that we haven’t turned a corner yet. That’s okay, though, because we really want an honest, accurate picture of what’s going on at all times. Worries about her blood pressure were still in place. They pulled her drainage nasogastric tube and replaced it with one for feeds so they could start nutrition today through that.

She continued to release fluids, although at a slower pace, as she got further out from the Lasix dose. The team decided to continue that Lasix every six hours, and she always dumps a lot right after each dose and then tapers off as time for the next dose nears, but overall, her elimination is looking good for now.

They watched all of her key numbers more closely for awhile and then decided to try stopping the med keeping her blood pressure up to see how she would do. And she has stayed at a stable and acceptable blood pressure reading all day, even with the Lasix going every six hours. That was another huge victory.

But her first attempt for feeds around noon didn’t go well. After just a little while of her feeds running at a slow rate, she began to retch and choke and gag. This was absolutely terrifying for her with the breathing tube in place. She hasn’t really been the same since then. She has seemed emotionally depressed and more withdrawn. This could be because of the sedation, or because she is more aware of what’s going on and feeling the heaviness of it all. Or something else that we haven’t identified yet.

She is trying more and more to communicate with us, but she can’t talk because of the breathing tube in her throat. Watching her becoming seemingly more depressed, watching her try to talk, watching silent tears flow down her cheeks as they changed out her nasogastric tube, and then watching her struggle with the feeds were all so hard and left me feeling pretty weepy during the early part of the day. I think I’m just beginning to fully comprehend how sick she is. I’ve just been trying to focus on her and haven’t really processed it. She is still in such a fragile place in many ways.

That said, there have some positives today as her lungs sound like they are moving more air after they changed some things in her ventilator settings. Also, her second feed is running now, and that seems to be going much better this time.

And the biggest boost for us was a visit from someone very special. You may have read my posts on Facebook lately about the benefit concert being held for The Shepherd’s Crook Orphan Ministry tonight. Jason Gray traveled to Cincinnati to do this concert for us, and all of our other still-at-home kids are there right now, having a wonderful time. Before surgery, Lilyan was so upset that she would have to miss this concert. Jason offered to come see her here this afternoon before the concert, and he drove straight to the hospital as soon as he got to town.

Scott and I were blessed more than we can ever say by our time talking with Jason, and we could’ve talked with him all night. Here are some very special pictures and one short and very, very special video clip of him singing one of Lilyan’s favorite songs to her. She was able to wake up enough to choose the song she wanted him to sing, even though she drifted back off soon after he started singing. We may share the whole video later if we get permission from Jason to do that. Later in the afternoon, she asked to watch the video on my computer. She tried twice to watch it through, but dozed off almost immediately both times, poor thing.

Here are some pictures from our visit:

Concerns this evening are:

• Breathing still isn’t where they would like to see it
• In spite of all of the fluids her body is now eliminating, her swelling is still very, very bad. It suddenly became alarmingly worse late this afternoon in some places, like her upper arms. They think it’s just taking time to get all of this extra fluid out, and that it’s shifting in her body making it look so much worse in some places.
• Lilyan is suddenly having chest pain. So far, each time she has complained, the nurses have suctioned out fair amounts of mucus from her lungs, and that eases the pain a bit but doesn’t eliminate it. No one is overly concerned about this right now because her lungs sound even better now than they did this morning, but they are watching it closely. It is making her pretty uncomfortable.
• Her overall “down” mood. We do think that things will get so much better for her if we can get her off the ventilator so she can talk. She was able, by answering with nods and shakes of her head, to tell us that she is feeling sad, frustrated, and scared. I asked if she wanted me to try to explain why all of this was happening and she said yes. I gave her a simple overview of what happened Wednesday night, but she had trouble staying awake to follow that, so I’m not sure how much she retained. A dear friend suggested that we come up with a system of photos for her to use to communicate her wants and needs, and our daughter suggested an iPad app that our grandson with autism uses for that. We’re still working on perfecting this for her, but it does seem to help a little bit at times.

Thanks, as always for all of the comments and prayers. I really do want to respond to all of those encouraging comments, and I still plan to try to do that. We are so grateful for the love we are feeling.