Alex was born in December, 1988.
He spent the first week of his life in the neonatal intensive care unit at Rush Presbyterian St. Luke’s Hospital in Chicago. After many tests and procedures he was diagnosed with a neurogenic bladder, requiring catherization around the clock for the first 2 ½ years of his life. He continued to have problems and it was apparent that his intestinal motility was not normal. He was properly diagnosed at 3 years of age with chronic idiopathic intestinal pseudo-obstruction. At that time he required his first central line, which was surgically placed into the main artery in his chest. This was done to give him Total Parental Nutrition (TPN) to intravenously sustain his nutrition, calories, and fat to survive. His digestive system could not tolerate and absorb the food he ate by mouth. Alex had a total of 5 central lines placed in his chest from 1991 to 2001.
In July of 2001, Alex saw a new doctor, Dr. Colin Rudolph, in Milwaukee at Children’s Hospital of Wisconsin. Alex was in such poor health and had major central line access site issues. He was literally wasting away.
In August of 2001, at Dr Rudolph’s suggestion, Alex had a jejunostomy tube (J-tube) placed in his jejunum for nocturnal formula feeds and a gastrostomy tube (G-tube) placed in his stomach for drainage. This worked well for Alex, it was a more natural way for his body to digest the formula, and much easier on his liver than the TPN. He was able to maintain his nutrition with just his J tubes and was thrilled to get rid of his central line. This new feeding procedure gave Alex a more normal life as a teenager.
Despite his health issues, and frequent absences from school, Alex was able to play on the Glenn Westlake Middle School 7th and 8th grade volleyball teams. He also made the honor roll. In high school at Glenbard East, he took advanced classes, and continued to play volleyball. During Alex’s junior year the Varsity team took 3rd in the Illinois State Finals, and Alex was an intricate part of the team. Alex graduated from Glenbard East High School in 2007. Currently, he’s a part-time student at the College of DuPage. His career goal is to become a Pharmacist.
Over the past 7 years Alex’s health has been complicated with many procedures and surgeries as a result of adhesions and large bowel volvuli. He’s had approximately 80% of his bowel removed, and was eventually required to have an ileostomy placed in July of 2007. His intestinal motility has worsened and he now requires a groin central line for TPN nutrition. Alex is only able to tolerate limited amounts of oral food at this time.
Through out his life, Alex has had over 17 major surgeries, and way too many hospital stays to count. If not for Dr. Rudolph, and Alex’s team of doctors and nurses at Children’s Hospital of Wisconsin in Milwaukee, he would not be here today. It was Dr. Rudolph who referred Alex and his family to Children’s Hospital and Regional Medical Center in Seattle, Washington, in November of 2007, for an evaluation of a small bowel transplant. The recommendation was that Alex would benefit from an intestinal transplant. His intestinal failure is irreversible and his central line access sites are extremely limited.
Alex is as active as his body will allow him to be. He deals with what life has dealt him with determination, perseverance, and with what seems like an unending supply of inner strength.
When asked about his life, Alex says: “It hasn’t always been easy but, I wouldn’t change a thing. This has made me who I am today.â€Â
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