After our day of both up’s and down’s yesterday, we had a night of nothing but down’s last night.

I never went to bed at all last night because Lilyan barely slept and needed to hold my hand constantly. Scott only slept a little bit. The fluid is such an issue and causing Lilyan to feel like she is drowning or suffocating much of the time.

They added a second diuretic during the night and that worked beautifully alongside the Lasix, but she is still completely unable to rid her body of fluid without that help, and it never seems to be enough to resolve her issues anyway. We just met with the ICU team, and they are going to continue both of these meds for now with the hope that we will see great improvement with her fluid output today.

She is also running a pretty high fever now, even with Tylenol. They have ice packs around her body to help bring that down, and have added another antibiotic to her very long list of medication. They took samples of blood, urine, and lung secretions to start cultures on all of those to see if they can find the source of infection. There is still a chance that there is no infection, but that this is another way that her body is reacting to all of this fluid she is holding onto. If that’s the case, then hopefully, ridding her body of the fluid will also take care of the fever.

They have also played with her ventilator settings again, and have actually taken steps backward in that area for now. But at the moment, keeping her comfortable while we address the fever and keep trying to rid her body of these fluids is the most important thing. So some steps back seem like the right direction to us for the moment.

For that same reason, they have also increased her sedation again to try to keep her calm during these more intense periods. Sometimes, when she is in her most acute phases of these “suffocating periods,” they can suction fluid from her lungs. Other times, they can’t get anything out, but you can hear the fluid in there and feel it with each breath if you lay your hand on her chest. She is also wheezing now, so they’ve added Albuterol to her meds list.

She is tired. She is fighting so hard and is so sweetly doing all she possibly can to respond when we stroke her hands and face and urge her to relax and calm down during her moments of panic. I honestly know that I couldn’t do that as well as she is if I felt like I was drowning. But she is clearly getting tired. Taking these steps back will allow her to give her body the rest it needs and let the rest of us fight these battles for her for awhile.

Please keep praying for our brave and strong little girl. Please pray that we can keep our thought processes, ability to communicate, and emotional responses where they need to be in the midst of pretty intense fatigue ourselves. Just walking through each day requires a lot of mental energy.