Luke's Fronto-Orbital Advancement (FOA) Surgery

Luke had his third cranial surgery on November 21st to make room for his growing brain. Over 7 hours later, Luke's Plastic Surgeon came in to tell us that it went very well and that he was very pleased with the amount of space he was able to give Luke.

In surgery, Luke's doctors removed his forehead in three separate pieces. When bone is cut and moved around like this, it becomes a bone graft. After making some repairs to Luke's outer dura mater, they put the bone grafts back in, arranging their position in such a way to make Luke's forehead larger and giving his brain more room.

Post-op care went as well as anyone could hope for. Luke was able to leave the Pediatric Intensive Care Unit (PICU) the following day and he experienced normal swelling that occurs with a FOA.

In the days following surgery, Luke started showing signs of possible infection, including persistent swelling, fever, and vomiting. After several tests and panels checking for other sources of infection, Luke's surgeons decided to reenter the surgical site. During this surgery, Luke's surgeons found his skull to be infected. They removed all of his bone grafts, washed everything, including the rest of his skull, and dura. The surgeons put Luke back together and also added some extra drains to ensure all excess fluid would be removed from the skull. They also placed a PICC line to administer IV antibiotics over the next couple of months.

Luke was transferred back to the PICU for observation. That is when everything got very scary. The infection went into Luke's bloodstream and he went into septic shock. The PICU doctors and nurses rushed in to help Luke's very low blood pressure and very high heart rate. We were asked to leave while they placed an arterial line and worked to stabilize Luke over the next several hours. While Luke was in critical condition, he was placed on several medications to help raise his blood pressure. An unfortunate side effect of being on these pressors was that Luke had a very high blood sugar. Over the next 48 hours Luke was weaned from the blood pressure medications as he tolerated it. Finally, after days of being on many medications to keep Luke healthy, he was able to resume eating and, though it proved challenging at first, he regained his appetite!

We were finally able to leave the PICU and Luke started to become his old self again!

We spent 18 long days in the hospital before we finally got to go home! The days ahead concentrated on healing. Luke came home with one drain from his skull and his PICC line. The drain was not in long, but he had the PICC line for 7 weeks. He was given IV antibiotics every morning that were administered for one hour. He also received oral antibiotics. He was a trooper through it all! Luke was able to get his PICC line out in time for his second birthday!

To date, this has been the biggest hurdle. A repercussion of the events has been that Luke has lost approximately one-fourth of his skull. When Luke's surgical teams thinks that is safe, only then will they reenter Luke's skull and begin reconstruction on his forehead. Until then, everyone's top priority is keeping his head safe!