Day 8: Asking questions- First of 5 Posts on Being Your Child’s Advocate

31 Letters to the New Mom of a Child with Spina Bifida

Day 8: Asking questions- First of 5 Posts on Being Your Child’s Advocate

Today is day 8 in my 31 day blogging challenge about my daughter's Spina Bifida Diagnosis.  The next few posts will be a series of 5 posts on being your child's advocate. 

Dear Momma,

After Jaycie was born, she had to lie on her belly until she had her back closure surgery (surgery was within 24 hours of her birth.).  After the surgery she had to continue to lie on her belly for several days until her incisions had started to heal.  During that time she developed a horrible rash on her bottom.  It was awful-looking.  Red and at times it would even bleed.  As her Mom, I was mortified that she had it to start with so I started to ask questions.  I knew the nurses in the NICU were using ointment when we were not there but what I couldn’t understand is why it was a different type every time we had a nurse shift change.   One nurse would use vaseline, one would use a typical zinc-based ointment and one used something I had never heard of.  The other thing was they were leaving her diaper on her when we weren’t there.  So I started to ask the nurse questions.  “Why are they changing her creams?”  “Why aren’t they letting her bottom air dry?” When I started to ask those questions that wonderful nurse gave me answers and she told me something that I have held onto ever since.  She said, “You are the Mom, what you say should be put into the nurse’s notes.  What would you like for us to do?”  So I told her that I wanted the urologist to recommend a cream for the rash and we will all use only that cream.  I also told her to put into the notes that when Jaycie is in her bed, that the diaper should be placed under her, but not over her bottom.  She needed to stay as dry as possible until we could get it all cleared up.  In less than 2 days the rash was gone and I was empowered to know that as her Mother I could make decisions regarding her care.  I want you to know that you have every right to ask questions and make suggestions about her care.  This is the first of 5 posts about being your child’s advocate.  Today, I want you to be empowered to ask questions.  Ask the seemingly small questions along with the huge questions.    

With Love,

Sherry

P.S.  I you have any information or stories of your own "empowerment" please share it with us.