OH! No! A Schedule!

I’m currently in South Dakota with my aunt and my best friend.  We gathered at my aunt’s house in Grant, Nebraska Saturday with the goal of spending a few days exploring Wyoming before joining other family next weekend in Billings, Montana.  Yesterday morning we stopped to see some family in Lewellen, Nebraska before moving on to the Wyoming adventure.

My image of this trip was that we would just go.  With no particular place we needed to be or anything we had to do, we could just find the things we wanted to see and experience.  What I did not understand when I suggested the trip or in the months looking forward to the trip was that my aunt had a need for a more defined schedule. She needed to know where we were going and what we were going to see. What was freedom for me, was confusing and anxiety producing for her.  She had a strong need to know what to expect.

A schedule gives us a certain security and sense of well being.  It is even more so for children.  For children much of the world is unexplored and unfamiliar.  So a schedule that is dependable provides a foundation that is known and comfortable.  Children then know to expect.  They can anticipate and prepare for the next event.  With that firm foundation they are better able to handle the other parts of the day that are unknown and unexpected.

A body needs the regular maintenance of food and sleep. Children as well as adults are more emotional and short temper if they get too tired or too hungry.  If neglected for much longer, the brain is more affected.  One’s thinking becomes clouded and reaction times slow significantly.   When a child’s body struggles to heal or hold on to his or her level of health, getting too tired or too hungry uses energy needed for other things.  Therefore, schedules are even more important for children living with medical issues.  

 It does not have to be complicated just consistent. The most important pieces are the times medications are given and bed time. Bedtime is relatively simple.  The body very naturally adopts a schedule.  If you take a nap one day, the next day at the same time your body wants to sleep again.  So maintaining that time helps the body.  It also gives the opportunity to create a family ritual that benefits everyone.  Spending a few minutes reading books, listening to calming music, or having a private conversation quickly becomes a favorite time for kids and parents.  I spent a few minutes every night with Maddie  reviewing the day, identifying favorite moments and fun experiences, remembering people who were struggling, identifying things that I was proud of her for and reviewing what she could expect in the morning (activities, nurses, and my work schedule).  It turned out to be a favorite time itself. 

Even more important than bedtime is a child’s medication schedule. In my experience giving medications at the same time every day is vital.  That can be difficult when a child is receiving medications multiple times a day. Morning and evening meds are not so difficult because they are worked into morning and evening routines.  Medications due in the middle or at odd times are a problem.  Several parents I know used the alarm on their watches or phones to help remember.  I wasn’t good at that.  I struggled with those medications. 

I found it much easier to keep a med schedule when the dosage times were changed from 3 and 4 times a day to twice.   One of Maddie’s neurologists looked at her medication schedule and reworked the schedule so that all her medications were given in the morning or at bedtime.  What a gift!  I quickly became very protective of the twice a day method.  Whenever a doctor attempted to add a med at another time, I was very firm in maintaining the twice a day schedule.  Surprisingly most of them appreciated what we were trying to do and found alternatives that worked on the twice a day schedule.

Ironically, the place that caused the most problems with keeping a schedule was the hospital.  It was very frustrating.  If Maddie wasn’t sick going into the hospital, she would have gotten there quickly because of the crazy ways of the hospital.  Medications given hours late and being woken up to get a breathing treatment or other procedures is hard on a child’s body.  In addition, hospitals often change the medications to generic which are not quite the same as the medication the child is used to.  If a child is on multiple medications, it is easy for there to be errors in the type, dosage, or timing.   All of that adds additional stress to a child’s body.

During the transition to hospital care it is important to provide accurate information about all medication, communicate information about a child’s schedule, and emphasize any personal needs.  Unfortunately every shift change begins a new stranger who is unfamiliar with your child’s needs.  Consequently, a parent is often an educator when it comes to helping nurses and other care staff learn your child’s ways. Most caregivers will be very concerned about giving your child the best possible care but never forget that not all caregivers are created equal.  If one makes you uncomfortable, there is likely a problem.  Be kind, understanding, and compassionate but firm in communicating your concerns.  If that doesn’t fix the problem find the floor supervisor.  This is your child and he or she is depending on you to make sure the care is the best, including maintaining a schedule.