Ulcerative colitis is one of a few inflammatory bowel diseases. Diagnosis often includes health history questions, questions about symptoms, blood and stool sample testing and quite regularly, an endoscopy/colonoscopy. How does a parent explain this to a young, sick child? Let’s just say, it ain’t easy. I opted not to give Kira the details, but to talk generally about the purpose of the visit to the hospital: to determine what is wrong so we can start getting her well. I was scared for her and tried not to convey it. I knew it was essential for proper diagnosis and pressed forward, through my fears. I did everything I could to reassure her in this strange environment and she did well, even with her own fears, while I was by her side. Even in the changing room, “Mommy, why do I have to take off all my clothes?” I pushed on through, holding her hand.
We then returned to the hospital bed where IVs were started, questions were asked and vital signs were taken. I stood by her, holding her hand for reassurance. I knew they planned to do general anesthesia, stick scopes into my baby girl in two different directions, I’d had to sign all the waivers acknowledging risks and so forth. I was barely holding on…and then the bomb dropped. This anesthesiologist would not let me into the operating room to hold Kira’s hand until she was unconscious. There would be whole long minutes while she was awake and scared and I could not hold her hand. It brings tears to my eyes even now. She wailed all the way back to the operating room, I wailed all the way down the hall. A nice nurse came to me minutes later and said she stayed with Kira, holding her hand, until she was unconscious. I was grateful, but still felt I had failed her in that moment.
A different anesthesiologist might have let me stay with her. I regret not halting everything until a different situation could be set up. We all survived that day. Kira still asks about it sometimes, says it was a very scary time for her. She doesn’t remember the details, but I do. The diagnosis was correct and proper and that day provided the needed information to her pediatric gastroenterologist. For this I am grateful.
I encourage you all to advocate for yourself and your child, even in the face of fear and uncertainty. Medical procedures need to maintain the human element. I wanted to prepare you for a trying time. You will get through it. By knowing a little about our experience, maybe you won’t have the regret that I do. And for having the means to share my experience, I am grateful.
Tagsadvocate anemia bowel diseases caregiver support CCFA children chronic illness in children Colonoscopy continuity of care crohn's disease digestive issues digestive system disorders Endoscopy flare up IBD medication primary caregiver record keeping relapse remission Specific Carbohydrate Diet support support team symptoms of colitis symptoms of IBD treatment treatment team UC ulcerative colitis