What's new with TJ

On 3/30/00, TJ was admitted to UCLA Medical Center at 5:45 am for his first surgery for the release of coronal sutures and reconstruction of the skull. TJ was fortunate to have one of the best reconstructive surgeons in the United States provide treatment of his craniofacial abnormalities.

Mark and Cynthia were able to stay with TJ until the start of surgery at 7:30 am. TJ was actually quite calm for not having any food or liquids for eight hours. Mark and Cynthia were kept well-informed by an assisting scrub nurse on TJ's status throughout his operation. The surgery involved inducing a coma and removing TJ's skull for reconstruction. Dissolvable screws and plates (similar to an erector set) were used as inserts between pieces of skull bone. The surgeon was able to position his soft spot from his forehead back to the top of his skull. The doctor said TJ always had a forehead, it was just in another area. His surgery ended around 2:45 pm, and they transferred him right away to the Pediatrics Intensive Care Unit (PICU). His parents were anxiously waiting to see him in recovery. TJ's head showed a great deal of swelling but he was resting comfortably hooked up to a ventilator, catheter, and IV's while receiving sedation and antibiotics. The assisting plastic surgeons praised how strong he was during the long surgery.

The following morning TJ's saturation reduced which meant he was close to breathing on his own. He was extubated in the afternoon, and his crying began. Respiratory therapy was started in order to keep his airway open. His upper respiratory passage required suctioning, and he developed a little bit of a runny nose. The PICU staff gave him morphine to help ease his pain. They also wanted to continue him on the IV for another day, so this meant no food and using his homemade pacifier as the trick to comforting him. As the swelling went down he managed to open his eyes, kick his feet, and move his arms around. They then transferred him from a bed to a crib. During the evening, he wasn't feeling that well, and his saturation started to increase. The doctor said he had problems with his airway and his upper respiratory passage that required continuous suctioning. This distress was out of the norm and caused alarm. The doctor also explained that TJ would fall into a deep sleep and forget to breathe so they decided to keep him under an oxygen tent. Throughout the night the doctor and nurses were debating on whether or not to put him back on the ventilator.

By the next morning, TJ's saturations decreased. The doctor stayed on the cautious side and wanted to wait until the afternoon to attempt his first feeding. He was still receiving morphine for his pain, and the medication kept him sleepy. Mark and Cynthia were able to watch the plastic surgeons rewrap his bandages and view his beautiful new features on his face. He felt better as the day went by and was moved to the East Wing PICU, a sister unit. The doctor felt he was finally well enough for a feeding, and boy was he ready. He took five ounces of formula for the day.

TJ's swelling continued to go down, and his appetite gradually picked up. He's such a strong boy, and his parents are so proud of him. Even the staff was surprised by his fast progress. By day five he was moved to a regular hospital room and shared it with another young boy. His sister Misia, his grandpa Ron, his Babci, and friends Spanky and Janice paid him a visit and wished him well. Posters, cards, and gifts from family and friends were placed all around TJ's crib during his stay. Amazingly he spent a total of six full days in the hospital and then was discharged for home. His parents want to thank the nurses (Anne, Barbara, and Ester) for making them feel at ease during their visits with TJ.

On the night of discharge (4/4/00), he ended up spending the night in Westwood with his parents. That was a nervous night for his parents to take care of him in the hotel room. They survived! He had a scheduled team re-evaluation meeting the next day at the UCLA Craniofacial Clinic to discuss his progress and to determine the next surgery. TJ's next surgery will be in approximately three months for release of the lambdoidal sutures in his skull and the separation of his pinkie fingers. The reconstructive and hand surgeons will need to coordinate a surgery date once separate doctor consultation visits have been made.

TJ next met with the reconstructive surgeon in his Santa Monica office on 4/15/00 for a post-op appointment. TJ's skull and stitches were healing wonderfully as each day went by. The dissolvable screws and plates will take two to three weeks to dissolve. His head will take three months for the healing to completely take place by slow shifting of skull pieces forming to his brain as it grows. He has a follow-up appointment with the surgeon scheduled for 5/26/00. TJ also has a follow-up eye appointment scheduled with a local opthamologist on 5/4/00 to check his eye positioning after his first surgery.

TJ handled his first surgery as a real trooper. He's adjusting back into his home life and has gone from waking up five times a night with nightmares down to two times a night. He receives his physical therapy twice a week, and his mother is working with him each day to get him up to speed. He loves to listen to music, stare at pictures, follow objects, grab his handy-dandy homemade pacifier, and watch his older brother play with him. He's even starting to give lots of smiles. His family is very proud of him!

Previous Progress Updates

Progress 3-13-2000