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Sunday, February 10, 2013

Feeding Tube Awareness Week-Our Story

Today is the kick-off to Feeding Tube Awareness week. Today's topic is tell your story. to make a LONG story short I'm only going to talk about her tube related issues. If you want to know about Caelyn's other struggles, feel free to browse around on the blog. Here goes:

Caelyn had trouble eating something since birth. I knew something was wrong, but her doctors kept brushing me off. We moved back home where I knew that there was doctors whom I could trust. Right away her doctor sent us to ENT who looked down her nose and throat with a scope then sent us downstairs for a swallow study. They told afterwards to wait in the waiting room and the doctor would come talk to us. I could feel the tension in the air. I knew something was wrong. About an hour later, the doctor comes to talk to us. He says that they have to admit Caelyn right away. He said that she needed something called an NG tube. This is a tube that goes down the nose, through the esophagus and into the stomach. The doctor that she was silently aspirating everything that she was eating. This was so scary for us! Caelyn was 6 months old at this point and to think that she had been silently aspirating for that long!! She could have been seriously ill...or worse. We were in the hospital for about a week while Caelyn had some other testing done and we had to take classes to learn how to use the tube and replace it.

About 2 weeks later, Caelyn kept getting sicker and sicker. She just was breathing right and there was times she stopped breathing all together! We took her back to the pediatrician who right away sent us back to the hospital. We spent about 5 months in the PICU.  She ended up getting a trach and a G-tube. A G-tube just directly goes into the stomach. I was so conflicted about this decision because Caelyn had so many struggles with it from the beginning. She developed some pressure ulcers which later developed into MRSA. Her tube leaked from the holes and sores and she was able to use it for a little over two weeks. She was in a lot of pain and it was hard to for to see her like that. I was so torn inside, wondering if I had made the right decision.

Caelyn got her G-tube for dysphagia (trouble swallowing), failure to thrive, and malnutrition. It was a long scary road, but I wouldn't have it any other way. Caelyn's tube is a life saver and allows her to be here with us today. This week we are trying to spread awareness of feeding tubes. Kids with feeding tubes do not need pity.  Some kids eat with a fork and spoon, mine eats with a tube and syringe :)