Evan's Story
Evan Louis Rhodus was born October 4, 2005, at 29 weeks gestation. He was born with achondroplasia (the most common type of dwarfism), chronic lung disease of prematurity, restrictive lung disease, ASD, and bronchomalacia. He also had hydrocephalus, which resolved after shunt placement, and pulmonary hypertension, which has resolved. Evan still has ASD (a small hole in the heart), but it is not causing any problems at this time, so the doctors want to wait to operate. It may still close on it's own. Evan has spent most of his life in hospitals. When he was born, he spent 4 months in the NICU at one hospital, then we were home for about a month. Then, Evan went into respiratory arrest at home, and we ended up in the PICU at another hospital, where he spent a year. While in PICU at Batson's Children's Hospital, Evan had to get a tracheostomy because of his severe breathing problems, and a gastrostomy feeding tube because he was not eating enough by mouth to gain weight. The doctor's at Batson's attempted on many occasions to wean Evan from the ventilator, but none of these attempts were successful. The consensus was that Evan just needed to grow, get bigger and stronger before he would be ready to come off the ventilator.
In January 2007, Evan had tubes put in his ears, and we found out that Evan has malignant hyperthermia (a severe allergy to a certain class of anesthetic gases). These gases were used during the surgery because we didn't know about the malignant hyperthermia (MH). So, it was an extremely scary incident for us. Thankfully, the nurse anesthetist, caught the MH quickly, and gave the drugs and therapies to counteract this horrible reaction. Evan was placed back in PICU on full ventilator support (he had previously been doing most of the breathing on his own). God was watching after Evan. He recovered from this MH incident rather quickly, and was back to his baseline.
In February 2007, Tori and Evan transferred from Batson's to Children's Health Systems-UAB in Birmingham, AL to undergo home ventilator training so that we could finally bring our son home!! Tori and Evan's grandmother through the training program, while Chris stayed home in Mississippi and worked during the weekdays.
Before we began the home ventilator training, the doctors at UAB wanted to do an MRI to look at Evan's head and spine. He had not had an MRI in quite some time, so I thought this would be a good idea. The neurosurgeon returned and told us that Evan had severe tightening of the foramen magnum region (the opening at the base of the skull). He suggested surgery to decompress the foramen magnum and remove part of the C-1 vertebra. If this area were to become any tighter, it would have compressed on Evan's spinal cord, which could cause paralysis or death.
Evan had the foramen magnum decompression and C1 laminectomy surgery on March 26, 2007. We brought him back home to Mississippi on April 2, 2007. He has been doing well! God is so GOOD!
