Yesterday's Incident & When We Leave the Room

On Wednesday, some nurses were saying that patients don't hear you when they are fully sedated. I have never believed that. I keep telling Scott that she knows we are here. Wednesday, Scott and I went to lunch. Right after we left, she became agitated about something, and sat up and said "MAMA!" through her breathing tube, and tried to pull it out. They sedated her to calm her, and calm her pressures.
Wednesday, after I left, she had a bad night and worsened after we left.

Thursday, she opened her eyes several times and Scott and I were there. Of course, she opened her eyes out of agitation or pain. However, because of her bad night with pressures and fluid in her lungs, they sedated her heavily. Scott and went to lunch at around 3:00ish - a totally different time than the day before. I told Scott how sad I was to see her look so weak and despondent. I told him that I wished she would wake up, so I could look into her eyes and assure her that we were there. I also wanted to look into her eyes, because it is the best way for me to see what she is feeling.
Suddenly, I said, "Scott, we should go. I'm afraid something is wrong." He told me not to worry. About 10 minutes later, we left. As we were leaving the cafeteria, her ICU unit called me on my cellphone and asked if we were near. They said she was fine, but the doctor needed to speak with us about an "incident". I was totally panicked. I had a million things going through my mind: she coded, her surgery needs to be reversed...
We got to the 5th floor of ICU and a nurse was waiting to escort us to the doctor. It also so happened that my Deacon from church was waiting too. I said hi to Deacon Jim and told him we'd be back.
The took us to a private room to meet the doctor. I was so nervous. He came in and told us that there was an "incident". Jiliang fell out of bed. They got her taken care of and order x-rays. She pulled out her main arterial line in the right side of her neck and she pulled out her ventilator tube. The good news is that her pressures stayed okay and she was breathing on her own, although labored. She was without blood pressure meds for awhile and was unaffected.
Honestly, all I could do was laugh when I heard what the "incident" was, because I was expecting the worst. What most parents would be irate about, I found comforting. My girl showed her strong spirit and will to, albeit - escape. She is now known as the little girl with strong will with a flight risk.
Many of you might find this unsettling, but we know that the medical professionals are providing excellent care her and this was just an accident. She was completely unaffected by the slip out of bed, although she may have some battle scars from pulling out her main line and trachea tube.
The nurse was mortified. The doctor is charge was all over it. He ordered a CT of her skull, because of her current skull defect, and to make sure that she did not have an internal bleed. Everything came back negative: skull CT, X-rays of her abdomen and chest (on the hospital).
We assumed that she slipped out of one restraint and slid down the bed until she was in a sitting position, because there was not as much of a bruise, or even a scratch. She still had a hand in the air from a restraint. How does a fully sedated kid do this, unless she knows that we leave?
I think that Jiliang is hypervigilant about the separation anxiety, so she fights the sedation. The day nurse said that Jiliang should needs more sedation and fights the sedative effects. Most kids without prior surgeries do not need that much sedation, but she is doing everything she can to stay awake.
Right now, she is so out of it, and it is hard to believe that my strong girl is in there somewhere. I just have to believe that she is waiting to bust out of her shell, and that she doesn't give up hope - She gave me a sign yesterday. I am just so sorry that she has had to endure all of this. I can't wait to see her in a conscious state, so I can reassure her that she has not been abandoned. I think that she will thrive better when she feels safe in the security of her family.
Right now, she has an infection, fluid pockets on the lungs and trauma to her body from the actual repair. We think that the need for O2 and high pulmonary pressures at systemic levels are due to the pulmonary effusions (fluid in both lungs). She is still stable, and I feel that she is going to make a recovery; but as parent, there is always that fear of things taking a turn for the worse - I have a fear of the unknown.
I am staying here again tonight, but I have requested that the staff alert me if she is having a rough night. I told the team of doctors at her morning call that I would rather rest assured knowing she is safe, if I haven't received a call. My sleep can be interrupted. That is why I stay here and not at home.
I appreciate all of the prayers, and I am getting ready to check on her now. For now, Scott is with her. Thanks for your continued prayers.