We had an active night last night in Lilyan’s room here in ICU, and no sleep. For pretty much every minute of the night, there were three or four people hustling around her bed and watching over her. The team here has been great. Trying to balance all of her precarious needs right now is quite a challenge. She’s stable overall, but it’s been kind of a battle to keep her there. She would start to stir and come out of the sedation a bit and then reach for her breathing tube, so they would increase her sedation and her blood pressure would drop and her ventilator pressures would increase. So they would give her paralysis meds, and then her heart rate would go up. Over and over again. Then they would increase pain meds because they worried that the increased heart rate might be due, at least in part, to pain, and then her blood pressure would drop again. They were so attentive all night, so that even if she barely moved at all, they were right on top of it. They were determined not to let her get scared or uncomfortable. But, as is typical in a situation like this, everything they would do just affected something else.
The night just kind of blended right into the morning as doctors began making rounds again. Several times we were reminded that she is “far from being out of the woods,” and that “that breathing tube isn’t coming out anytime soon,” (but no one explained their definition of soon). But she just keeps taking little baby steps forward, and sometimes she takes steps back. There have been no predictions, yet, about how long she will be on the ventilator or how long she will be in ICU. They do believe that it’s mostly a matter of time before her body will begin to balance itself out and these things will begin to reverse, but they aren’t sure how long this will take and just keep trying to make sure everything stays as stable as possible while we all wait for that.
Lilyan has been slightly more responsive today, and that’s more the level of sedation they like to maintain, rather than completely knocked out. But her increased alertness also makes some things more difficult. She keeps drifting off and then coming back toward consciousness and reaching up to see what’s on her face/in her mouth. If we can’t keep her hands down (because she could accidentally pull the breathing tube out), they will have to put arm restraints on her. But Scott and I have been watching her closely, and she responds very well to our voices and touch, and her music. She is staying mostly peaceful and responding to our questions. Early this morning, she was even able to make us understand that she wanted Maggie and Murphy and her family photo, and that she needed her music turned up louder. She is being so sweet and so strong.
They have described her lungs as “a smidge better,” and the most current concerns are her blood pressure, which continues to stay very low, and the fact that her body is barely putting out any urine. Her body is holding almost all fluids in the tissues (which is also causing her blood pressure to drop), instead of making the fluid available to be used as it should be, and then eliminated. This is also causing the swelling to worsen, especially in her arms and legs. She is very, very puffy all over.
They want to try some Lasix, but her numbers just aren’t stable enough for that. They are going to try switching up some of her meds, and add a small amount of blood pressure medication and see if they can get her numbers to increase with the hope of being able to try a small dose of Lasix later tonight. That would be a great thing to pray for. They are becoming pretty concerned about the lack of output, and so are we.
As we are moving into evening, she also seems to be becoming more agitated in her drugged mental fog, and that also causes anxiety that messes with her numbers and makes keeping her hands away from the breathing tube harder. We are hoping that switching her sedation med will help with this.
The really great piece of news is that she seems to be having virtually no pain. This is most certainly due to the fact that she has no feeling from about the waist down. Sometimes being paralyzed carries benefits, and this is definitely one of those times.
Some have asked about the kids at home. They all seem to be doing very well, and even Kathryn is sleeping much better these days. We can’t thank all of you enough for the love and the prayers and the continuous flow of encouragement via texts and comments on our blog or Facebook. Thank you!
We’ll continue to update as things move forward.