“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.
Really beautiful post, Iris. Very moving. I’m still not feeling well, and haven’t been doing much in terms of emailing people. I hope you had a good Christmas and New Year. How are you enjoying your new job and home?
You are a very good writer. And especially, a terrific mom.
Thank you. I think mothering is a learned art that is sometimes hard won. Now that my sons are grown I feel grateful when I receive a text that just says, “I love you.” 😀 I got one today.
Oh, my mum also remebers that (although a little later, mid 80s, but the situation was so much different that these times…). We’re using telegrams delivered to homes instead of calls (excluding post offices and hotels no phones available). But that was rather hospital – parents communication not the way back. You – the parents of GSD kids (including my awesome Dad and Mum) are so amazing… Thank you for all you did (and are doing) for us.
Times have changed Monika. How we treat the disease has changed, but how parents love their children never will. Thank you for reading the blog. Now that I am settled in my new job I hope to be writing weekly again.
Beautiful blog! I can so relate to these stories! My daughter, age 36, was a ‘frequent flyer’ of our local emergency department when she was younger. She is doing terrific now! Thank You, Iris, for posting these. You are putting into words what so many of us have experienced. We, too, always called the ED in advance to let them know we were on our way. That advance notice gave the ED time to have everything ready when we arrived so time was not wasted. And, we had a ‘protocol letter’ from her physician outlining the appropriate treatment in an emergency. One regret I have is that I did not keep a journal for all these past years. Keep up the great work, Iris!!
That has been my hope……To “put into words what so many of us have experienced.” Thank you.
The stomach flu ran through our whole family like wildfire last week. Our 6 Y/O grand daughter ,Jamie ,was the 3rd to get the VERY active bug…we think the 2 y/o little brother shared it so generously with all of us. Jamie quickly had to go to the ER, where all the prep was attended to …the ER doctors and attending personnel could not have been more attentive and they were so grateful for the generous collaboration with Dr. Weinstein. They had never dealt with GSD…the weaning from D10 and ultimately a successful discharge but with the help of a very informed family, a GSD expert in Dr. David and a hospital that cared carefully and listened humbly we can report we are all happy and healthy TODAY.
Thanks for sharing. I think as we share our successful encounters in potential
scary situations it makes it easier for newly diagnosed families.
Beautifully written Iris, i find it very comforting to read your stories. i now find myself thinking and planning ahead for emergencies and letting the people in my daughters life know the drill as well. Thank you for sharing.
If there are other situations you want me to write about let me know. I have 37 years of stories. 😀