Update on Vivian - 6/28

Some of the machines by Vivian's bed. The giant "caulk guns" on the right are medications that are administered into her IV over a predetermined period of time as the gray disk slowly compresses the large syringe

Vivian had a quiet day.

She had to have a blood transfusion this morning because she was anemic. Her magnesium and phosphorus levels were also low so they added those minerals to her IV. The amount of muscle protein in her blood continued to trend in the right direction; tonight the CPK number was down to about 2800 from over 10,000 Friday and around 5,000 yesterday. I found out that "normal" is around 80 - yikes. They have Vivian on Lasix to try to help her kidneys flush the toxins from her body, but the Lasix infusions were causing her blood pressure to drop. So they switched her to a continuous drip of a small dose of Lasix and she seems to be tolerating that much better. Vivian still has pneumonia and infection in both lungs, and though her lungs sound a little better, the chest x-rays don't show much improvement. The physical therapist visited today and worked with Vivian's feet and legs a bit. She also fitted her for little boots that will keep her feet from becoming dropped, a common side effect from lying in bed for extended periods. Nothing has grown yet in her blood cultures to indicate what made her sick.

Vivian's much-loved neurologist stopped by her room tonight. It was so nice not only to see a familiar doctor but to see someone who knows Vivian as she really is. We have been so pleased with Vivian's PICU doctors, but they only know her as a very sick, sedated girl, not as her sweet and funny little self. It was good to visit with Dr. Riela, and we especially enjoyed the time when he and the attending doctor were in the room discussing Vivian's situation with us. They are hopeful that Vivian's high fever did not cause any brain damage because she never lost consciousness. Their consensus seemed to be that no one thing led to the crisis on Friday, but rather several events likely collided to create the "perfect storm."

I cratered a bit this evening. I think the stress of the past week and the realization of how very sick Vivian is finally caught up with me. Vivian's face is very swollen from the IV fluids, and she doesn't look anything like herself, so that is very difficult too.

We still have a long way to go. Thank you for walking through this valley with us.

“Have mercy on me, O God, have mercy on me, for in you my soul takes refuge. I will take refuge in the shadow of your wings until the disaster has passed.” Psalm 57:1