Taylor James "TJ" Johnson
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Taylor is a living miracle. At the 19 week ultrasound, it was discovered that he had a diaphragmatic hernia, meaning the diaphragm on the left side did not develop correctly and allowed his stomach into his chest cavity taking up necessary space for the lungs. The doctor stated there was a 50/50 chance of survival.
At a 27 week ultrasound, measurements were done for a head to lung ratio. This test showed he had a large portion of his right lung and a significant portion of his left lung, but neither was complete. At this ultrasound it showed his stomach, spleen and a portion of his intestines were in his chest cavity. We were told that he had a 99.99% chance of survival.
Taylor was born at 38 weeks via C-section. A neonatologist and staff were on hand to intubated Taylor immediately at birth. He weighed 6 lbs 2 oz and was 20 ½ inches long. His apgar at birth was a 2 and grew to a 6. Along with the diaphragmatic hernia, it was discovered that he had severe pulmonary hypertention.
At 6 days old, Taylor had repair surgery. The hole in his diaphragm was larger than expected. There was only a rim of the left diaphragm and a whole new one needed to be created for him from Gortex. At the surgery, it was discovered his stomach, spleen, intestines and upper lobe of his liver were all in his chest cavity. A few days later we were told that very few babies with such a large repair rarely survive.
Taylor remained intubated until October 24, 2003, when he self-extubated. He was able to be on a nasal cannula until November 25, 2003. He was not growing properly, so we agreed to a trach. Within three hours we could see a difference. He was active and smiling, something we hadn't seen in a month.
At various stages of Taylor's hospitalization he received 3 Broviacs (central line IV's), 6 chest tubes due to fluid build up in the space where lung should be, and an incredible number of x-rays, IV's and CAT scans.
In December, Taylor received his GT due to an oral aversion, which is common for children who have been intubated for a long time and also for trached children. At this same time it was discovered that the pulmonary hypertension had resolved.
Taylor as finally released on February 3, 2004. At that time he could be off the ventilator 5 minutes a day and on CPAP for 2 hours twice a day. As of August 2004, he is off the ventilator during awake hours, CPAP at naps and is slowly being weaned off the ventilator at night. He currently weighs 22 lbs and is 30 ¾" long. The doctors estimate his decannulization to take place in spring 2005.
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Enjoying an early birthday present
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Cruising around the furniture
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All of this crawling is really hard work
