Our daughter H was diagnosed at 3 weeks of age with Glycogen Storage Disease Type 1a (GSD 1) at Nicklaus Children’s Hospital. We spent almost a month in the NICU, and recently, she was admitted into PICU for recurring episodes of hypoglycemia. GSD Type 1a is a rare metabolic condition that severely impairs the affected individual’s ability to maintain adequate blood glucose levels. Treating a GSD 1a patient is a race against the clock. Glucose checks must be taken an hour and 45 minutes after each feed, and feeds must be administered exactly at the 2-hour mark. Blood glucose levels, around the 2-hour mark, can fall as fast as 2 mg/dl per minute. It’s difficult for nurses, at times, to grasp the urgency and severity of this condition - mainly because the patient physically looks normal.

Apparently, per many nurses who shared this with me, it’s standard practice to have a 30-minute buffer before/after the specified touch time to administer the feed and complete all related touch time tasks. However, for a patient with GSD, even a 15-minute delay could be the difference between a normal and critical blood glucose level. Jenni has been the best nurse that has ever cared for our daughter.

On her first day caring for H, Jenni took the time to look up H’s condition to become informed and fill in the gaps in her knowledge that could provide key insights for her care. After doing her research, Jenni sat with us as we explained to her H’s condition, and immediately began to shoulder the weight of H’s condition alongside us. In the 3 days that Jenni cared for H, not once did I have to remind her to do a glucose check on time, warm and feed her on time, or complete any tasks related to her touch time that were time-sensitive. I never felt so safe leaving H in the PICU until we met Jenni.