I’ve seen you in those hospital rooms. I’ve seen you hand your child off to surgeons, not knowing if you would ever get to hold them again with a beating heart. I’ve seen you pray, hope, and hold on to faith with a sheer will that would put most to shame. I’ve seen you hold your baby with tears streaming down your face because this kind of sickness isn’t the kind that just comes and goes, this is the kind where no one can assure you that your child is going to be okay.
You fight for your children when they can’t fight for themselves. You hope for them and you stay positive for them, and then run to the bathroom just to cry in the stall where they can’t see. You research and talk to doctors and talk to other parents to find the best possible treatment plans and solutions to give the best life to your child. You take part in care for your child in ways even some in the medical field are intimidated by – dropping NG tubes, changing trachs, giving IV meds through a Broviac at home.
You go to the places no one wants to go. You know a side of the world that most would like to pretend doesn’t exist. Continue reading →
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.
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.
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