Update on Jiliang - She's Doing Better :)

We left last night and came home. I was going to stay, but the waiting room was packed. I dreaded staying last night, because there was a large group. Cell phones are not permitted in the waiting room, obviously out of respect for the families. Of course, there are always wonderful, supportive families who wait in hope that their child will pull through his or her next surgery, next day, next hour, next breath, and you talk and support one another - pray for their children.
Then, there are "those" people who bring every family member and forget to respect other people's privacy, peace, quiet and space. There were a group of people whose cell phones went off every 20 seconds with loud, blaring music. Then, they just scrolled down through their phones, playing 5 second clips of each song loudly. Then, there were these guys who were playing some comedian DVD on their laptop very loudly, and although it was humorous, it kept me from sleeping which I really needed from the night before. Later, the same guys were playing music backwards and laughing about it being Antichrist. I was so unnerved. Honestly, if I had stayed there, I probably would have resorted to violence or crazy behavior, and you would have seen me on the news. The hospital was mortified over Jiliang's fall and asked us if we had any suggestions on how to make the care better. We offered nothing at the time, but I can suggest that waiting rooms be more peaceful in lieu of families' needing peace and rest during these difficult times.
Right now, there is no sleeping space in her room, because she's in ICU right now. Once she moves to a regular room, I can sleep on the pull-out in her room. It was difficult to go home, but she was stable when we left and doing okay, as opposed to her previous night.
Just before midnight, I called to get an update: Her pressures were at 1/2 Systemic and she was doing well. This morning, the nurse reported that she had a good night and her pressures were just above 1/2 systemic. Half systemic is not where we would ultimately like to be, but it is great news and definitely a move in the right direction. It also means that her heart is adjusting, with medication, to the pulmonary pressures that need to take place to prevent further lung deterioration. Her pulmonary hypertension is the result of her repair not being done at birth. To be alive at all from an unrepaired Truncus Arteriosis is truly a Miracle.
All morning yesterday and the two evenings before, she was at 100% systemic and rising, which caused us to worry if she was going to have a successful recovery, and if the repair was going to all be for nothing. That is a horrible feeling. When doctors mention things like "sudden death" with high pulmonary pressures, it is so daunting.
One of the saddest things about staying on the Pediatric ICU floor is the sadness that you experience in the eyes of other parents. Yesterday, we got in the elevator with my parents to go home. Someone mentioned a party to T.J. and a woman said, "There should be more parties around here." Then, she said, "Today is my birthday." As we got ready to roll the Happy Birthdays off our tongues, she continued, "My son died today." We felt so much pain for her and my dad hugged her. I don't write this to make anyone else cry, but it just serves as a reminder that we should all cherish every moment with our children.
I will keep you all posted. Other than your typical ICU stress, there is the normal stressors of everything going on: life, finances... Yesterday, I found out that my FMLA had not been handled yet, and I was originally going to go back to work on this Monday. I was totally freaked out by that. Luckily, my Principal contacted me and assured me that she would check into it on Monday for me. That was a huge relief, and I am so thankful not be worrying about that this weekend, when I plan to rejoice over every baby step of Jiliang's recovery.
Thank you so much for your prayers, because they are helping us. For the most part, we are 95% strong and at peace. There are always those times when you feel pushed to your limits, and you think that God couldn't possibly dispatch another prayer plea, when I have been blessed by HIM over and over again these last few months - but HE always comes through. Once again, my daughter has overcome another hurdle and we are praying for continued recovery.
Thanks so much.
God's Blessings to you all.
Jill :)