Tip of the Week: Rain Gear

It has been raining for a couple of days in this corner of the world.  One trick to make life easier for a child who uses a wheelchair is a rain poncho.  The hooded kind with open or snap shut sides is great.  Leave the sides open and it will easily cover the child and most of the chair (including all the stuff that get hung on the back). 

Caring for Medically Fragile Children - Welcome

Hi,  Welcome to Caring for Medically Fragile Children!   Years ago now, I went from being a single professional who was working three jobs to being a mom and primary caretaker for an incredible little girl, named Maddie.  At three month old she was a beauty with big brown eyes and a head full of dark curls.  It took all of three seconds for me to fall in love with her. 

Six weeks before I held her the first time, Maddie had been resuscitated from a near SIDS event.  The damage from the event was catastrophic.   The medical professionals caring for her in the first days wanted to remove her from life support but due to the twisted circumstances of her already complicated life it would required a court order.  By the time it was determined who had the right to make medical decisions, Maddie was able to breathe on her own.  The prediction was that Maddie would be a quadriplegic, blind, deaf, and profoundly mentally retarded.  Not a pretty picture!

Thankfully most of that prediction was not accurate.  She was not blind or deaf.  Although technically she was a quadriplegic, she could make some purposeful movements with her arms and could move her legs a little.  She was definitely not profoundly mentally retarded. 

I had been caring for children most of my life but I was no way prepared to deal with the issues that Maddie had.  Over the next few years, Maddie’s true medical issues surfaced.  She came to me with an apnea monitor.  She wasn’t even on any medication.  First diagnosis was reflux…add two medications.  Then seizures (later diagnosed as Lennox-Gastaut Syndrome)…add four medications.  Then urinary track issues…add 4 surgeries, daily catheterizations and irrigation (often 3 times a day), and oral antibiotics.  Continued issues with reflux and GI problems…add multiple surgeries, g-button and j-button and more medications.  Reoccurring pseudo-pancreatitis…add IV nutrition and heavy duty pain killers.  You get the idea!    Not your typical child.  Maddie was a medically fragile child.

What is a medically fragile child?

A medically fragile child is first and foremost a child!  That may seem elementary but too often the wonderful and unique child is lost behind very complex medical needs.  These children have complex medical issues that have to be attended to every day.  Some are dependent on technology like feeding pumps, ventilators, wheelchairs, standing frames, and other life giving mechanical devices.  Medically fragile children may have frequent issues requiring medical attention.  It is easy for the medical issues to become the center of the child’s life and by nature the center of the child’s family.

I believe that when a medically fragile child enters a family, the family is immediately as risk emotionally, physically, financially, and spiritually.  The welcoming of a “healthy” child is stressful for the whole family.  Welcoming a child with complex medical issues is stressful on steroids!  It is possible for the experience to be an amazing and life enriching.  I personally view my adoption of Maddie to be the best decision I ever made and sharing the journey with her a privilege.  It has not been easy.

Caring For a Medically Fragile Child

Loving a child who lives with complex medical issues is not easy.  It is my hope that this blog will be a place to find hope, encouragement, ideas, tips and resources for families with a medically fragile child.