In memory of Shane Torrence (1/28/93 - 9/11/99)
A mom on a mission raising awareness of the condition that took my only child at age 6 and a half - Congenital Diaphragmatic Hernia CDH takes the lives of 15,000 children every year and harms 15,000 more.
Will you care?

Friday, April 11, 2014

Shane's Story - Chapter 9

Our second day home, during my shift, our electricity went out. Shane's vent battery kicked in; it had an hour internal battery. I took him off his oxygen concentrator and hooked up a tank. I frantically called the power company, who told me a car had run into a generator and the power would be out for at least another 2 hours. Shane was on their emergency power list, but there was nothing else they could do. I called our medical equipment company and they talked me through hooking the vent up to a boat battery, and then the director came out to sit with me until the power came back on.  That was my crash course in going into "take of things Mommy" mode.   Other moms have to deal with leaking diapers or breast milk.... I was hooking my kid up to a boat battery.   That was our new normal.

Shane's first Christmas was the best Christmas we ever had, even though we couldn't go home to our families or to our new niece, Kirstin, and nephew, Frankie, healthy babies, born to my sisters. I love them like they were my own. Those jealous feelings went away and were replaced by relief that they wouldn't have to go through what Shane did. When we put up the Christmas tree, Shane started to look at the lights. He could see! Our very own Christmas miracle, after we were told he would never regain his sight!

Local churches donated money, toys, and even gifts for me and Jeremy. The local police station donated a $200.00 gift certificate to a nearby grocery store. My parents traded us their '88 Aerostar mini-van for our tiny '91 Escort so that we could transport Shane and all of his equipment to his doctor appointments. An anonymous, and I'm certain, wonderful person donated a double stroller so that we could carry Shane, his ventilator, his oxygen tanks, suction machine, diaper bag, feeding pump, and other medical equipment. Shane has shown us the truly wonderful side of humanity. So many strangers helped us out in our time of need.

We had many ups and downs after Shane came home. He wasn't gaining weight from the formula he was sent home on, so his nutritionist decided to try to switch his formula to a higher calorie formula that was milk-based. Shane had a severe allergic reaction to the formula and went into anaphylactic shock. We almost lost him. We learned he was allergic to all milk products, eggs, chicken, and red food dye. We had to keep an Epinephrine dose with us at all times. Even if a drop of anything containing milk touched his skin, he could go into shock.

We turned Shane's first birthday into a major event; we didn't know if he would ever have another. I spent 3 days painting Precious Moments clowns on his cake and decorating our kitchen. We couldn't have open flames around Shane, so I make one out of construction paper to put on his candle. Our tiny home was filled with family and friends. Shane was oblivious to all the activity, but he did manage to accidentally put his hands in the cake. We actually got a picture that the parents of "normal" one-year-olds get to take of first birthdays! Life seemed good again.

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