iPads, Hoyers and Vents, Oh My!

When you have a medically fragile child, new vocabulary becomes commonplace in your vernacular. Twelve years ago I didn't know there was such thing as a NICU, PICU, different ventilators, suction machines, and so on. I didn't know what a Vest system, a stander, a cough assist or a Hoyer was. These were all foreign words and products to me. Why would I need to know these things? They didn't relate to my life. Little did I know...

Here I am twelve years later, my son spent time in the Neonatal Intensive Care Unit (NICU) after birth to get him stable enough to go home. (I'm sure they thought they were sending him home to die, but they did get him stable enough to make the trip home.) Throughout the years he has spent much time in the Pediatric Intensive Care Unit (PICU), where they have brought him back from the brink of death, cared for him in times of severe sickness, held my hand during trying times, let me sleep on the chair in his room, talked and did crossword puzzles, kept me sane through the rough years, became my friends.

We have a virtual hospital in the cutest boy's room. I like to pretend that his room looks like every other (almost) twelve year old's room, but I know the truth...he has no sports posters on his wall (couldn't care less!), no favorite bands (prefers classical and opera...weirdo!), no fancy colors or designs. His wall does have drawings and get well cards from his friends (especially his BFF) and a few posters that we have gathered from Randall Children's Hospital or Shriner's. He has a lift system that surrounds the area where his bed is located, he has a Hoyer (which is a portable lift) if we wanted to take him away from his bed. He uses a Vest System to shake him up and a cough assist to clear his airway. All of these things have required training and years of practice to use effectively.

Tomorrow we are getting a new ventilator called a Trilogy. At the 2013 MTM-CNM Family Conference, I was talking to a representative from the company that makes these ventilators and was saying that I had "vent envy," (which made him laugh) since this new ventilator is smaller, lighter, quieter. As the cutest boy gets bigger, he wants to be on the ventilator more and we let him make that choice. Only with other families with ventilated children would you have a conversation which would (or could) include the phrase "vent envy." Only with other families with medically fragile children would have discussions about these different types of machinery, brands of medical equipment or medical supplies. It is a strange place in this Land of Oz that I live in.

This Land of Oz, where special wheelchairs are found and parents can freely converse about all the crazy equipment that their child comes with, is a place where others can go. It is a hard place, a place that can be filled with worries and concerns, but it is also a place filled with hope. Our own version of Dorothy drives her chair along the Yellow road (not brick..too bumpy) with her companions, The Lion, Scarecrow, and Tin Man. Each of them brings their own flavor to the ride. The Lion gives us strength through all the hard times, which sadly, there are often many, the Scarecrow helps us keep our minds fresh, remembering all important medical information about our child, and the Tin Man has heart...something needed to remember the massive amount of love and joy that comes from having such special children.

iPads, Hoyers, and Vents, Oh My! Toto, we're not in Kansas anymore, but I think we might be somewhere better...a place where special parents go...


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