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Lukie’s Story

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Lucas (we call him Luke or Lukie) was born May 13th 2008 as a healthy full term baby. Luke never ate as much as we tried to force him. On day 2 we realized he had never passed meconium (the first stool that most babies pass with in the first few hours of being born). That night the gas built up and put pressure on his lungs causing him to turn blue and needed oxygen.

He was rushed to the newborn Intensive care unit of the hospital. Mom kept trying to nurse him but he still refused to eat. He then threw up projectile dark green bile. Doctors performed several tests over the next 2 weeks and were clueless why he could not tolerate feedings, and was so constipated. His abdomen was very distended and there were lack of bowel sounds. The doctors then transferred him to the Children’s Hospital to see a Gastroenterologist. As much as the doctors tried they still could not find any answers to Lucas’s problems. At one month old he was given the diagnosis of Chronic Intestinal Pseudo Obstruction (CIPO). He was sent home with a central line which he received 20 hours of total parental nutrition (TPN). As well as 2 medications, Reglan (too help with vomiting) and Eyrothromycin (motility drug). He would also drink 3 mls of predigested milk every 3 hours.

The next 2 months Luke was hospitalized for 2 central line infections and a blood transfusion. His liver was starting to fail due to the TPN. He had sevier reflex and was very constipated. His stomach was so distended you could see his loopy bowels trough his skin. In September he became very sick and dehydrated. Mom and dad took him back to the Children’s hospital. With medical intervention the next 2 days things still did not improve. The doctors decided to do an emergency exploratory surgery and place an ostomy. They soon discovered he had a bowel infection called Necrotizing Entercolitis (NEC). The surgeon removed 30cm of dead intestine and 30cm of very sick grey intestine was left inside and treated with IV antibiotics. At that time they gave him a Jejunostomy. The doctors were very concerned about him and if he would survive, But Luke surprised the doctors and did great! Luke spent the next 4 months in the hospital and had 2 more bowel surgeries and had a G-tube placed. The first year was spent more time in the hospital than at home. He had several blood infections and became dehydrated easily.

In April of 2010 we traveled to another Children’s hospital for more motility testing. Lukie did great staying in bed for 10 hours during the test. The results showed his small bowel and colon were both affected by CIPO. His nerves do not function correctly causing the bowel to squeeze too hard in some areas and not squeezing at all in other areas. The doctor told us must likely he will never be able to be off of TPN. This was hard news to take.

Today Lukie has a broviac to receive TPN and antibiotics, G-tube, and an ileostomy. He has had many hospitalizations and countless blood infections. He is a very happy 3 year old and lives life to the fullest! He always has a smile on his face and everyone that meets him can’t help but to fall in love with him. He is a fighter and great example to us.

 

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