Being put on a Ventricular Assist Device (VAD) is a major surgery, especially for an incredibly sick baby. Recovery was intense the first few days, but Leo’s vital signs began to stabilize and his lungs were improving. Within a week, he had a nice, clear chest x-ray (chest x-rays are done daily in the CICU while receiving intensive treatment; they can be spaced out more later on as the child gets closer to moving to the CPCU). The plan was to take him to the cath lab on Friday, just over a week and a half after his VAD placement surgery. If his pulmonary artery pressure was down from the decreased workload on his heart, he could be listed that day and receive a heart any minute thereafter.
This was the best case scenario and looked like it would happen. Until the morning before his cath procedure, a pesky white patch showed up on the chest x-ray. The surgeon put in a chest tube and a chylous effusion was confirmed (see previous post). They proceeded with the cath. His pulmonary artery pressure was acceptable for transplantation, but he could not be listed with a chylothorax of unknown origin. A critically ill infant on life support with fluid robbing his bodies of proteins and antibodies would not survive a heart transplant.
This problem went on for weeks. Doctors tried a chemical pleurodesis, where an irritating substance is put into the chest cavity to get it to seal off and stop the leaking. This was unsuccessful. Finally, the surgeon came to us and said that his only choice was to take Leo to the OR and perform a mechanical pleurodesis. This is where the surgeon mechanically irritates the tissue in the chest cavity. Surgery tends to be more successful in persistent cases. The surgeon also performed a thoracic duct ligation, meaning he tied off the duct where lymphatic fluid could be leaking from. Operating on a child who is already on a VAD is no simple task, but once again Leo handled the surgery very well thanks to his skilled surgeon.
It was yet another nervewracking day, but we waited in the waiting room with family and took care of Derek between getting hourly updates from the nurse.
The following days were not promising for the success of the surgery. A massive amount of fluid was still leaking. At first this expected because it takes time for it to finish draining out. It started to drain longer than expected and had a blood-tinged color. It could have still been a mixture of blood and chylous, but they tested it just in case. Soon after, the results came back positive for only blood.
Suddenly the situation turned emergent. Several doctors rushed into the room. Most were working on stopping the bleeding while a couple others sat down with me. There was a chance that the bleeding could not be controlled and it was beginning to feel like the end.
Thankfully there was one obvious cause of bleeding: blood thinners used to prevent a stroke on the VAD. These were immediately stopped for the time being. There may have been other interventions but if there were I was unaware of them with the distraction of how scary this situation had turned. After lots of prayers, tears, and waiting, I was notified that the bleeding was under control. And not only that, but the chylothorax was resolved too. Doctors theorized that when Leo bled, platelets actually sealed off the lymphatic channels and treated his chylothorax. Talk about a blessing in disguise!
One landmine down, one to go: Leo’s lungs.
*Stay tuned for the next blog post and please remember to share our COTA for Team Leo page with friends and coworkers to get the word out!