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.
Parenting – We all know that there is little real world preparation or training for the experience, even as a pediatrician, believe it or not. We therefore have to rely on others to help guide us as we raise our children.
It takes a family. We ask for advice from our moms and dads, our grandmothers and grandfathers, and our siblings with kids.
It takes a village. We get advice from friends who have their own kids, and from colleagues at our schools or in our local community.
It takes a social network? Yes that’s right, social media like Facebook, forums, and blogs are the new venue for parenting, according to a new study by the C.S. Mott Children’s Hospital National Poll on Children’s Health.
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.
My husband, Mike, and I were so looking forward to our baby’s 19-week ultrasound so we could find out the gender. That moment didn’t actually turn out as we had envisioned. In addition to finding out that we were having a precious baby boy, we also learned that he had spina bifida, meaning that part of his spinal cord was exposed outside of his body. This came as quite a shock. While I had only heard of spina bifida, my husband is a chiropractor and, with his educational background, knew all about it. For me, however, ignorance was bliss that day.
After the ultrasound and finding out about his diagnosis, we spent the day meeting with various experts from the Fetal Diagnosis & Treatment Center at C.S. Mott Children’s Hospital and Von Voigtlander Women’s Hospital, including a genetic counselor and several members of the Maternal-Fetal Medicine team. We learned about spina bifida and the treatment options available. They told us about a relatively new surgical procedure that could treat our son before he was born. Although not a complete cure, the surgeons would repair the spinal canal and cover it with skin to prevent further trauma. Research demonstrates better outcomes with this approach compared to standard surgery after birth. While there were risks for both me and my unborn son, which the team carefully explained to us – we did not hesitate to say yes in light of the potential to improve his outcome.