2010

On New Year’s Eve we made the decision to transfer Liliahna up to Primary Children’s Medical Center. The chest tube was no longer draining and we felt like it was time for her to be in a place where she would receive the best care available. Turned out to be the best decision we could have ever made.

Interesting side note- The good news: the vaccine given to Lili to prevent pneumonia (and the same vaccine given to children across the nation) protect against 7 different subtypes of the pneumococcal bacteria. The bad news: Utah is one of the only states in the country that has 8 additional subtypes of the bacteria, all of which are NOT covered in the vaccine. The really bad news: Lili had subtype 3. The really, really bad news: Subtype 3 causes stage 3 empyema. The really good news: No other hospital in the nation sees and treats more pediatric pneumonias than PCMC. These guys know what they are doing; that became evident very quickly.

Sending Lili off in the ambulance was heartbreaking. Kylan sat in the back holding her hand and Tiffany talked her way into riding in the front seat. I knew she was in good hands, but she cried for me as they rolled the stretcher into the back and screamed for me as they shut the door. That was the first time I cried. Turns out, it wasn’t the last.

Within minutes of our arrival at PCMC the attending physician and her team made the decision to give Lili a feeding tube. We knew we were in the right place. Here, they would heal her body, not just the pneumonia.

The interventional radiologist that placed Lili’s second tube was just outstanding. He spent twenty minutes drawing diagrams for us and showing us with the ultrasound machine exactly how the procedure would unfold and what he hoped to accomplish. He stuck his head out the second the tube was in place to let us know the procedure was complete and showed us how much fluid he had pulled out. 250 mL. At the time it seemed like an exorbitant amount. Little did we know what would come.

Oh, Happy New Year.

January 1, 2, and 3 were the same for us. TPA treatments for an hour every eight hours; TPA (tissue plasminogen activator) is an enzyme that is used to attack clotting in the body. It is commonly used in stroke patients and was used in Lili’s case to break up any loculations (think of the walls of a honeycomb) that the body had created in an effort to encapsulate the infected fluid in the pleural space and prevent infection from spreading to anywhere else in the body. TPA in the pleural space is a lot like hydrogen peroxide on an open wound. It churns and burns and those hour long treatments were torture for all of us.

Meanwhile Lili’s inflammatory markers were coming down slowly. Not as expected, but enough that the team was pacified with her progress. It seemed excruciatingly slow to me. Typically, they like to see this number drop in half each day of being treated with heavy antibiotics.

Typical: 30-15-7-3-2-1-0.

Lili: 64-57-51…etc… Try sleeping to those numbers.

After three days and ten treatments the tube had drained almost 2 liters of infected fluid out of Lili’s body. 2 liters. Go open your fridge and look at a gallon of milk. Yeah, just over half of that.

Monday January 4 the tube stopped draining any fluid. Lili was eating, smiling, and bossing everyone around. Why weren’t her numbers going down? If all the infected fluid had been drained, what was her body still fighting? Sepsis, meningitis, a lung abscess, the possibilities were horrifying.