Walking into Leo’s room the next morning was strange. My little baby boy, who I was reading his favorite book to just 24 hours earlier, was now completely sedated with cannulas emerging from his neck that carried his blood out of his body to the oxygenator and back. The room was cold to help his brain recover. He was swollen from the trauma of the previous day’s code event and almost unrecognizable. But he was stable. The NIRS that read in the teens the day before (see previous post) now read around 99. ECMO nurses and respiratory therapists stayed parked outside of his room 24/7. There was nothing for us to do except for be patient and let Leo’s body recover from a stressful start to life.

The day was filled with meetings that all families go through prior to a child being a VAD/transplant candidate, including a meeting with the surgeon, the medical VAD (ventricular assist device) director, and the RN VAD manager. We learned that the biggest risks of being on a VAD included infection and stroke. Infection is a huge concern because the cannulas go directly into his heart. There would be a sterile dressing over the open wound in his abdomen where the cannulas go in, providing a direct path for potentially deadly bacteria to get in. Because infants do not have an intact blood-brain barrier, any clots that form in the cannulas can break off and go directly to the brain.

There were three potential outcomes of being on a VAD. The first possibility is that Leo’s right heart wouldn’t recover and he would return from the OR still on ECMO. Second, his lungs may not recover enough to be listed for a transplant. So we hoped and prayed for option number three: Leo would do well on the VAD and receive a heart before a catastrophic stroke or infection.

The following morning, Leo was taken back to the OR for a surgery full of unknowns for us. 6.5 hours later, Leo was wheeled out of the OR on a VAD thanks to his brilliant surgeon, who figured out how to cannulate Leo’s heart in a way that had never been done before. Leo handled the surgery incredibly well. ECMO turned out to be a blessing as it provided a safeguard for his heart during the surgery.

Making it successfully through this surgery was huge, but it turned out to be only half the battle. The first few days Leo seemed to be doing well. His vitals were stable and his lungs were improving. That is, until a white area showed up on the chest x-ray later that week. It was a chylous effusion that is treated with chest tubes that drain leaking fluid from the body. This occurs when the lymphatic channels leak for various reasons, and with it the patient loses protein, fluid and antibodies. There were some treatments that the team could try on him, so there was no need to worry just yet. Little did we know, this chylothorax would prove to be the Achilles’ heel of Leo’s entire course.

The next blog in this series will detail an attempt to surgically treat Leo’s chylothorax. Follow along on our COTA for Team Leo facebook page for a notification when this is ready for you to read!