Saturday, October 27, 2012

Day 10: Listen to your Instincts and Press for Results

31 Letters to the New Mom of a Child with Spina Bifida
Day 10: Listen to your Instincts and Press for Results:  3rd Post in the series-Being your Child’s Advocate

Dear Momma,

When we brought Jaycie home from the hospital in November, I was terrified.  I worried that we wouldn’t know what to do if her shunt malfunctioned.  For us it wasn’t long before we were faced with that situation.  The week after Christmas, I noticed she was more sleepy than usual and wasn’t really herself.  I also noticed that her tubing from her shunt appeared to be more noticeable and looked like a question mark under her skin on the back of her head.  I
scheduled an appointment with her physician and he did an evaluation of her.  He seemed to think she was fine and said not to stress about it.  So I took her home, but I still couldn’t shake the feeling that something was going on.  Well, on New Year’s Eve she vomited a little and my husband and I were concerned but she had just seen her physician so I tried to push my instincts away.  The following day she vomited again, projectile vomiting!  I loaded her up immediately and headed to the ER.  After a CT scan they realized that the shunt tubing had actually come out of the skull and was lying underneath her skin (thus the “question mark” look).  That next morning (because of weather delays) my daughter had to be flown to another hospital for emergency surgery.  If I had trusted my instincts and pressed the physician for results then she would not have had to wait so long for it to be fixed and it would not have been an emergency situation.  Because of the circumstances surrounding the original placement of her shunt Jaycie ended up having to go back to the ER one month later because I noticed the “question mark” appearance and I trusted my instincts.  When the ER doctor gave me the news that it had come out again, I was not surprised but I was disappointed and sad that she would have to have another surgery.  Because I trusted my instincts and knew what her symptoms looked like, we were able to prevent an “emergency” situation by catching it before the fluid built up.  This time we were able to drive her to the other hospital.  Since that surgery, her shunt has done well.  I learned very quickly to trust my instincts and press for results.  Don’t be afraid to let the doctors know what and why you are concerned and what would give you peace of mind about the situation.  This is your child, not theirs, you must not be afraid to ask for a 2nd opinion or a certain test or procedure. 

With Love,


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