Rex Donovan Colagiovanni
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Rex Donovan Colagiovanni was born sixteen days past his due date, on September 4th, 2003. He was a completely unexpected pregnancy, but despite this, the entire nine months went very well—no problems at all! You can imagine how completely stunned we were when he was born with low-lying myelomeningocele. No tests had revealed this; I had even had several ultrasounds, and none of the doctors caught it.
His back was closed less than ten hours after his birth, and two days later he had a VP shunt placed for hydrocephalus that arose as a result of that surgery. After a week at the NICU, he was sent home and the prognosis looked great—his little legs kicked like wild, and his reflexes all looked terrific.
We had had him home for a little over a week when his breathing became erratic and he began to spit up more often. We assumed that he had a cold, but since we were aware of the possibility of a shunt malfunction, we called the doctor three days after the symptoms arose. He directed us to the emergency room.
What followed was terrifying. As a triage nurse checked us in, Rex turned bluish, but the nurse didn’t seem to notice. An RN happened to walk in at that moment, saw Rex’s face, and panicked. Within seconds what seemed like the whole ER staff had him pinned to a gurney trying to intubate him. The intubation failed several times, and they ultimately anaesthetized him. I started to feel faint. I couldn’t even see him behind the melee; I could hear him scream, and I had hold of his hand, until Rex’s father convinced me I should leave the room so the doctors would have more room to work. I did, and after I calmed down, they told me they were taking him to a PICU in nearby Sacramento, at the same hospital he’d spent a week in as an infant in the NICU. We drove over immediately.
It took several weeks and a shunt revision before Rex developed vocal cord paralysis and central apnea as a result of Chiari II malformation. His doctors recommended a trach, and we agreed. Within days he looked a thousand times better. He was still aspirating heavily when the nurses attempted bottle feeds, so to avoid the damage that can result from a long-term nasogastric tube they placed a G-tube.
As of now, his apnea is still a problem. He is on a vent, though it is set low enough to serve more as a safety net than anything else. He also receives 30% oxygen, which helps.
Since he was a small baby (6 lbs, 11.5 oz; 19.5 in) his neurosurgeon wants to wait until he’s bigger to attempt a Chiari decompression surgery. So far, Rex appears to take after his father—nothing can make him gain weight. He has gotten longer, though. Meanwhile, we are making arrangements to bring him home—with 16 hours a day of nursing care—in January 2004.
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Despite his many tubes (being total Trekkie dweebs, we joke that he’s a Borg baby, fully assimilated) Rex is absolutely adorable, feisty, and stubborn. He’s effectively removed every attachment they’ve given him at least once. His current project is to untie and remove his vent. We can’t wait until he’s a toddler and can remove his trach, too! Thanks for letting us brag about our little guy.
--Sarah
