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Friday, January 18, 2013

Technology-dependence

Most people are familiar with the term "special needs" which encompasses anything from food allergies to autism to genetic disorders and the medically fragile. Technology-dependent children, however, are a relatively small population in terms of special needs. It's not often that you see or hear anything about children with these extreme needs that includes things like oxygen dependence/continuous oxygen saturation monitoring and children with tracheostomies who may be either partially or fully ventilator dependent. In short, these children rely on technology to stay healthy and, frankly, to keep them alive.

A month after Ella was born, she was transferred from the NICU at a regular hospital to the children's hospital. At this point, Ella had been diagnosed with a genetic syndrome (CdLS), reflux and feeding difficulty, and relied on a feeding tube to eat which was fairly drastic to us being new to the world of special needs. I remember very clearly looking down the opposing hallway while walking to the NICU and seeing the sign for the "Technology-dependent ICU" (or TICU) and thinking to myself, "My God, those poor children. What has to happen for a child to end up there?" It just sounded bad.

Admittedly, if I were to hear someone utter those words within earshot of me now it would probably upset me because, of course, in our eyes she's great. But just as I was naive back then and had no clue what technology-dependent even meant, I understand this is the truth for the general population.

A short five months later, we found ourselves to be the parents of a child admitted to the TICU. Ella had received a tracheostomy due to a small and fragile airway and an inability to be traditionally intubated. We had also learned that she had both central and obstructive sleep apnea and she was placed on a ventilator at night with some supplemental oxygen needs. It was a scary world to land in with a six month old infant.

But today, nearly five years later, all of this "stuff" seems so normal to us. Ella doesn't go anywhere with out an O2 monitor, suction machine (to help clear her trach), feeding pump, emergency trach bag and oxygen. She is only on the ventilator overnight. Though she has been and continues to go through a lot medically, she is the happiest child you will ever encounter. You see, even we can count our blessings though to a lot of people our situation probably looks frightening and less than enviable. It's all relative, isn't it?

It's not likely that you'll run into a family like ours very often. For one thing, most of our children get sick too easily to be out of the home much, however many do go to school. But if you do happen upon a family like ours, my hope is that you might remember this post and have a better understanding about what it means to have a technology-dependent child. If you look past all the medical equipment, you'll see that we're just a family, like you, doing whatever is necessary for our child to thrive.

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