Oley Foundation

Finding a Ray of Hope

Kelly Smith, Newport News, Virginia

"Well, he sure doesn't look sick." I used to tell my doctor that if one more person said that to me, I'd scream! Living on TPN had disguised my son's condition until he appeared to be a healthy, plump child. One stranger even commented that "he'd obviously never missed a meal!" The truth was, he'd never had a meal.

My son has chronic intestinal pseudo-obstruction, a motility disorder that affects his ability to move food through his digestive system. Learning to understand his condition has been difficult, and trying to explain it to other people has been even worse. When people look at Walker they see an active, healthy-looking 2-1/2 year old. How can they know the pain and suffering, the surgeries, tests and procedures, the lines and tubes and machines that are a part of daily life, and the miracles that have brought us to this place. Maybe they can't. Maybe only those who have experienced these things themselves can truly understand. I think that's why groups like The Oley Foundation are important. Even though I've never met most of you, I find comfort in knowing you're out there, and that as you read my story, you'll probably understand at least some of what I've felt in the past and what I'm feeling now.

Walker was born 10 weeks prematurely after a very complicated pregnancy. His time in the NICU was amazingly uneventful except for being a poor feeder and slow grower. After 8 weeks he came home, a scrawny, screaming, 5-pound miracle. Since he was my fourth baby, I just assumed he had a bad case of colic. But, by about four months, I was certain there was something more wrong with him. He was still very small (under 7 pounds) and whenever he was fed, if he didn't vomit, he would scream for hours. We had already tried all the different formulas, but nothing seemed to agree with him.

Relearning Motherhood
Eventually, he began to refuse to eat. It was at this point that my role as a mother changed. Everything that came naturally in caring for a child no longer applied. I learned to drop an NG tube and hook my child up to a machine to be fed. When that didn't work, I learned to care for a CVC and how to do sterile dressing changes, hang IV bags, give IV meds, check blood sugars and hook up monitors. Midnight trips to the ER for high fevers or bowel blockages became the norm.

Tests, procedures, biopsies and more tests finally led to a diagnosis. But, unfortunately, very few answers. My doctor became my lifeline, my nurses my best friends. Life as I once knew it ceased to exist. I was left juggling a sick infant who spent much of the time in the hospital, three small children who wanted their old mommy back and a husband who was frustrated by his lack of control of the situation. At times I thought I'd go nuts - especially when some well-meaning person would tell me how great my son looked. If they only knew!

Switching to Enteral
At 18 months, after more motility tests, we decided to try enteral feedings as a way to get Walker off of TPN. Because of an immune deficiency condition, he was constantly getting line infections. So, due to the poor functioning of his stomach and duodenum, we opted for a jejunostomy, bypassing the stomach and feeding directly into the small bowel. Walker was the first child my doctor had tried this on, so there was no way to predict the struggle that lay ahead. From the first day after surgery, we were plagued with problems - blockages, leakage and Walker's inability to tolerate any feedings. But, we never gave up.

The next year was a long and hard one. Each day we had to assess Walker's intake of enteral fluids and adjust his TPN accordingly. If something didn't work, we changed it. We tried every medication we could get our hands on. Then we tried every possible combination of those medications with varying feeding schedules and rates. At one point Walker was on at least 12 different medications with feedings every two hours around the clock and at least 12 hours of TPN every day. Eventually, Walker went from 5 cc's an hour of 1/4 strength formula to 100 percent enteral feedings. It was an uphill battle, but at 26 months Walker was off TPN! We exchanged our central line for an infusaport and life became much easier.

Walker is now 30 months old and still off TPN. We are working on some oral feedings, but it looks to be another long road. We recently moved across the country and have had to start all over with new doctors, nurses and supply companies. That has been a difficult task, but we're beginning to settle in. Most people here don't know about Walker's past, and when they tell me how great he looks, I try to just smile and say "thanks." I am thankful. It's been hard, but we've survived. The Bible says that "suffering produces perseverance; perseverance, character; and character, hope;" (Romans 5:3,4). My goal is to keep persevering, and hopefully, down the road I'll find that I'm a better person for having done so.