“Nothing in life is to be feared. It is only to be understood.” Marie Curie
“Mommy, what’s happens if there is a fire in the night and the fireman doesn’t know how to unhook me from my pump?” Compassion rose to my throat and I took my son into my arms. “Sweetheart, that is such a good question.”
My next response was a pat answer about how they would figure it out and that they would probably take him pump and all. Then I pictured the safe guards I had initiated to secure the lines filled with glucose for a sleeping, dreaming, rolling four year old. Tape on the connection between his tube and the main line. Tape on the bed posts to prevent the tubing from pulling the pump off the dresser. His Dr. Denton’s sleeper with their custom button hole added near the ankle at the bottom of the zipper where I snaked the tube to meet his G-tube. He had thought of a safeguard I had not.
The little boy may not know from were this fear sprung (http://www.health.harvard.edu/newsweek/Childrens_fears_and_anxieties.htm) or that the word “fireman” was not politically correct, but he understood the permanence of his nightly infusion. Never a night passed without the ritual of connecting his gastrostomy to a long line of green tubing and his personal Folkman pump.
The next week my son and I had an appointment with the Fire Chief. We told him where we lived, the basics about glycogen storage disease and the life sustaining nature of his night time infusion. We took supplies to demonstrate how to disconnect and secure his G-tube. Written details were given to this caring man in uniform who time proved would never need to preform the duties. In addition, the chief put our home on a registry that guaranteed if the city lost electricity our home would be a priority. Brief, simple and important.
Lesson Learned: A child trusts you to keep him safe.
“Friendship is born at that moment when one person says to another: “What! You too? I thought I was the only one.”
― C.S. Lewis
Everyone who has a child needs a break to fill their vessel. Even a few hours can give a parent a fresh perspective. If you have a child with Glycogen Storage Disease you need a G-tube to fill yours. However, I am not sure if Vivonex could give you the lift you need. Finding people who truly understand the ramifications of late feedings, periods of high stress and feeding aversion is near impossible. I was lucky to have really great friends who were willing to try. Following are some of their experience while tending my children when I was off “filling my vessel.” The names have been changed…slightly.
“Wonderful Wendy” agreed to care for my two oldest sons who were then 18 month (wild type) and 3 year old (GSD) at her house while I traveled to Bermuda. There was the usual paraphernalia that goes with small children with an added pump, IV pole, dextrose, etc. Wendy told me that the first night she bathed the boys, read them stories and hooked the oldest one up to his pump. After turning off the light and closing the door she joined her family. A while later she went back to check on the boys and realized she did not hear the pump. It didn’t take her long to realize the electricity for the pump was supplied by the outlet that was controlled by the light switch. Needless to say, that did not happen again.
“Sanguine Sara” agreed to have my youngest son at her house for a sleep over. He was a grade schooler so I was still delivering the middle of the night feedings. I went though the instructions and asked if she had questions. The next day when I went to pick up my son, Sara told me that the middle of the night she woke up and realized she was late for the feeding. She was horrified. Her first thought was that she had killed him. I don’t remember him ever sleeping over again. I have to admit. Most of the sleep overs were at my house.
One of my friends is a nurse who is familiar with the rigors and responsibilities of the Intensive Care Unit. “Piggy Pat” (she collects stuffed pigs) came to our house to watch the children while we were away. When I asked her to tell me her experience she said she was so afraid she was going to miss a feeding so she carried an alarm clock with her the entire weekend.
If any of you feel so inclined I would love to hear your stories. I know I have heard some great ones at conferences; stories even a story teller wouldn’t make up. Hearing stories of other people’s similar yet unique experiences helps people know they have company on their journey.