Update on Vivian - 6/29

The atrium in the entrance to Medical City Children's Hospital

Robert and I met with Dr. Matson, the head doctor in the PICU, today. The three of us sat in his office while Dr. Matson went over Vivian's chest x-rays and lab work numbers in great detail and explained things very thoroughly. The meeting was very helpful, if a lot to take in at one time, and Dr. Matson has a wonderful bedside manner. I likely remember less than 10% of what he said, but essentially Dr. Matson told us that Vivian is "dangerously ill" but that he expects her to pull through this. Vivian's CPK numbers (related to the dead muscle cells in her blood) were vastly improved; they're now down to about 1600. I believe that means her kidneys are out of danger. All of the fluids they have given Vivian, however, to resuscitate her on Friday and to help her kidneys the next three days, are taking their toll on her lungs. Vivian has had roughly two liters more fluid (!) in input than output each day (hence her swelling beyond recognition). Her latest chest xray looked awful, much worse than when we arrived, because of all this extra fluid. They added another diuretic, however, and today was the first day Vivian's output exceeded her input. This is very good news. With all things optimal, the doctor hopes to work Vivian off the ventilator by the weekend. If any complications arise, obviously that could push that date into next week.

We also consulted with a geneticist today. The PICU physician told us that the cause of this event could possibly be metabolic rather than an infection (though her blood work also presents a good case for this being an infection). I thought that we had ruled out a genetic issue as the source of Vivian's developmental delays, but evidently the technology is much better now that it was 10+ years ago when we last looked down that road. This geneticist wants to test for a few things that might predispose Vivian to some factors that might have led to this episode (sorry for the poor explanation - I was lost by this point). The tests won't come back for 7-10 days, but the geneticist said given that we're going to be in the hospital for several weeks to a month, that should be fine. You might imagine that my heart fell into my stomach at that point. A month? Egad.

I would like to give a special thanks to someone I don't know named Lottie who left a comment on my blog. Lottie encouraged me to carry pictures of Vivian up to the hospital so that Vivian's doctors and nurses could see what Vivian looks like when she's not sick. I printed five pages of snapshot collages of Vivian at school and home, with her beloved cat Percy and baby doll Sarah, etc., and hung them on a wall across from her bed. Every person who came into Vivian's room today stopped and looked at the pictures and commented on what a precious girl Vivian is. The pictures were especially helpful when the geneticist met with us this afternoon, as she pored over each one.

Obviously I am WAY in over my head trying to process, much less relay, all of this information. I trust that we are in very good hands and that God has a plan for our sweet Vivian.

Thank you all for everything. We love and appreciate each one of you who cares enough to read these updates.

"Let us approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need." Hebrews 4:16