Mommy of a Miracle – Tips for Successful Testing and Procedures

kristine & isabellaAs a parent to a child with a brain injury, medical testing and procedures are a well known part of life.  Whether it is an EEG, MRI, EKG, LP or something else, I have found that with Isabella planning ahead is essential.  Isabella has had an especially hard time with EEGs.  An EEG is a test that measures and records the electrical activity of your brain. She had many EEGs the first year post Acquired Brain Injury (ABI) and they were very traumatic for her.  Isabella still has the scars and bald spots from EEGs three years ago.  Isabella has had more EEGs than I care to count; I have learned how to help make them less traumatic and more successful.  The more prepared she is (and I am) the better it goes.  Below are some of the things that I did to help Isabella with her last EEG:

1.)    Social Stories are written to describe a specific situation or circumstance.  They are a page long and use familiar graphics and language.  Isabella does better when she knows the details.  The EEG social story included where we were going, what would happen and how long the “stickies” would be on for.  We reviewed it for several days prior to the appointment.  Social stories can help alleviate some anxiety.

2.)    Positive Reinforcement is acknowledging and praising the good behavior.  Whenever Isabella has an EEG I make her an “Isabella SuperStar Chart”.  This chart is something that I make on poster board (size depending on length of EEG) and it is filled with words of encouragement such as “Fantastic Work”, “Amazing”, “Great Job” etc.  It is decorated with stickers and colored all pretty.  I set the chart up so that every 2 boxes is a heart which symbolizes “Isabella’s Choice”.  That means that Isabella can choose the movie to watch or the game to be played.  Every 4 boxes is a star which symbolizes a prize.  The prizes are not anything extravagant more like crafts (which she loves), stampers, books, puzzles etc.  The day is focused on keeping Isabella occupied and happy.  Isabella loves her chart and it really helps to keep her safe.

3.)    Role Play the specific situation.  For several days before Isabella’s EEG we practice how the appointment will go.   We practice waiting for our name to be called.  Then we pretend to go into the room and sit down.  I part her hair like they would and I used a rounded crochet needle to “mark” her head (they use a red colored pencil).  After that we put the “stickies” on.   We talk about how we have to be safe when we come home with the “stickies”.  I explain that the “stickies” help us know more about her smart brain.  We talk about the “Isabella SuperStar Chart” and how much fun it will be.  I practice how the “stickies” will come off with warm water and her hair will be wiped down.  I let Isabella practice on me and I practice on her.

4.)    Ask for a Child Life Specialist.  Most hospitals have Child Life Specialists on staff.  They help distract your child while they are going through a procedure or other stress inducer.  Not all departments have them though.  The EEG department did not have Child Life.  However, I spoke with our Child Life from another department and she was able to help support Isabella in a similar manner.  Isabella knew as soon as we walked into the room that her “friend” (Child Life) had left her a surprise for when she was all done.  This helped Isabella greatly as it kept things consistent.  If a department does not have Child Life Specialist bring another person (someone your child is very familiar and comfortable with) to help distract by doing a special highly preferred activity such as watching a favorite movie, playing on an Ipad etc.

5.)    Request a specific person.  If you have a good experience with a provider, tech or nurse, ask for them.  The last person we had for Isabella’s EEG was so fantastic that we requested him again this past time.  We had to wait for him but he was worth the wait.  He had a movie player all ready to go.  He thought outside the box and that helped make it successful.

The key to these stressful appointments is to be prepared and do whatever is humanly possible to make it a success.  For Isabella, EEGs have been horrific.  However this last experience went so well that I am hopeful that the next one maybe a little less traumatic. Planning ahead is so important.  What do you do to help your loved one get through medical testing and procedures?

Guest Blogger, Kristin Olliney, is the mother of 8-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor.

Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication.

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