Archive | January 2013

My Girlfriends’ Stories

Jan15

“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.

 

Emergency Department Interval

Jan10

“Serenity is not freedom from the storm, but peace amid the storm.”

The times of alarm clocks, fear of intestinal flu and trips to the emergency department are in the distant past for me now.  However, I remember some of those trips quite vividly.  I learned early on that letting the hospital know you are on the way is key.  It didn’t guarantee that the attending physician knew what to do, but it at least increased the chances. I understand that now families enter the emergency department with letters of instructions complete with glucose infusion rates and glucose weaning strategy for the attending doctor. Brilliant.  Why didn’t I think of that!  😀

In the early 1980s glucose monitors were not universally used in glycogen storage disease so I was cognizant of mood changes, fatigue, lethargy, sweating, tremors, etc. to detect hypoglycemia.  An hour before I made the decision to take my son to the hospital I called ahead and explained the situation to a doctor in the emergency room. I gave him the phone number of our endocrinologist so he could confirm the information.  My oldest son who was not quite three was not managing to keep anything in his stomach, least of all his cornstarch.  Fever had worn him out and there was no resistance when he was gently wrapped in a blanket and lifted out of his bed to leave for the hospital.

I carried my son through the doors to the hospital and was greeted by a doctor with a butterfly setup in his hand. All I can figure is that my endocrinologist put the fear of God in him.  It was a busy night and all the rooms were full.  An examining table in the triage room had been prepared, the IV was started immediately and bloods were drawn.  It was seamless.

My son slept peacefully with his head on my breast as I swayed back and forth in an uncomfortable waiting room chair.  My eyes were closed but I was acutely aware.  I felt his chest rise and fall with each breath and the warm weight of his baby legs rested on mine.   Filtering through the sounds of beeping monitors, people talking and  babies crying, I heard my son’s pump rhythmically delivering glucose into his exhausted body.  Oddly comforting.

A room became available, the nausea past and the sun rose.  It was a new day.

Lesson Learned:  Peace comes from within.