When we welcomed our son Mason to the world, we never expected we’d be here a year later saying our baby is 1…and he needs a kidney transplant.
As a transplant surgeon for both kids and adults, I spend my days and nights waiting for the call that a precious, life-saving organ is available for one of our desperate patients — a call that doesn’t come nearly often enough. But I have faith that one day signing up as an organ donor will be as normal and routine as wearing a seat belt, a bike helmet or putting on sunscreen.
Every day 17 people across the country die waiting for an organ. There are 123,253 souls currently on the wait list who hope, pray, beg or bargain for someone to be their hero. At the same time, an untold number of people took their organs with them when they died instead of leaving them to live on in someone else.
It’s not only a loss for the patients waiting for organs, but a missed opportunity for family and friends of organ donors to experience the comfort and pride that comes from knowing their loved one saved a life or many lives – leaving this world as a hero.
On Mother’s Day 2010, my son Gavin had his first seizure. That was just before his fourth birthday. Up until that point, Gavin was a healthy young boy. At the hospital that Mother’s Day, Gavin was diagnosed with epilepsy and a brain tumor. For the next three years, Gavin suffered from multiple seizures even though he was on five medications and a special diet. He had seizures most every night and sometimes during the day. We couldn’t leave him alone and had to limit our activities because we never knew when he’d have a seizure.
Every morning at C.S. Mott Children’s Hospital, 40 to 50 people gather for our 15-minute safety huddle. It’s an opportunity for staff to share safety concerns that can range from equipment issues to challenging family situations with the potential to cause safety issues. It’s not the place where we solve the concerns, but it’s a place for concerns to be voiced and connections to be made so issues can be addressed. After the huddle, a quick email recap is sent out to more than 250 staff members.
Not all medications are formulated by manufacturers in dosages appropriate for children. Pharmacies make those medications by compounding them — meaning they crush and dissolve the adult medication and suspend it in liquid in a dosage appropriate for the child’s size. The problem is that different pharmacies may compound the same medication at different concentrations — meaning a teaspoon of medication from one pharmacy may not be the same as a teaspoon of the same medication from another pharmacy.
We wanted to investigate the prevalence of compounding variability and create a solution that would decrease the potential for medication adverse events occurring due to inadvertent wrong doses being administered. Data was collected that identified 147 medications that are compounded for children and found that there were 470 different concentrations of those medications being made. The concentrations of which varied widely.
The hospital world is one of many codes. For those of us who work here, we are trained to react quickly and with great precision when a code is initiated.
Just like with the many codes used in the healthcare world, the tools and procedures that child life specialists reach for when we’re called upon are truly evidence-based, and are an important part of your child’s health care.
As I child life specialist, when I hear the sound of crying toddlers who are having their vitals taken in preoperative bays, I grab the magical bubbles that are packaged in a crayon shape. Off I go down the hall, like the Pied Piper playing a flute of bubbles. Ninety percent of the time, bubbles work to quickly calm a tearful child. The other 10 percent, the Certified Child Life Specialist (CCLS) becomes any number of extraordinary characters equipped with magical toys. Okay, that may be a bit exaggerated, but that often is how my day feels as I enter the PACU and the preoperative work ups begin.