Why is it so hard?!?!

I do not understand… why it takes so much to get someone to care for your child.  Talynn has been sick for a week and a half and we still do not know all the reasons.  We do know that Feb. 5th she had her vaccines, Feb. 7th she went to the ER for respiratory distress (they sent us home on albuterol treatments), Feb. 9th she went to pediatrician for respiratory distress (they sent us home with steroids & antibiotics), Feb. 10th she went to the pulmonologist ( they confirmed she had pneumonia), Feb. 13th she went to pediatrician for lymph node & rash on her leg (they sent us home with nothing), and for the past two days she has done nothing but SLEEP.  Her pediatrician said it could be because she has been sick and dehydrated so we increased her feeds but it has not made a difference.  I know we are all human but it is to the point that it is a BATTLE to get Talynn the right care.  I know everyone cannot know everything but I am so SICK of the UNKNOWN!

On Feb. 7th, we went to the ER… I knew that Talynn was sick and I asked the resident doctor (we never saw a doctor) if I could go ahead and get steroids and antibiotics because I knew she had a respiratory infection.  They did not give it to me.  When I went back to the pediatrician on Feb. 9th she did not want to do anything either besides send me back to the ER.  I begged her to call our Pulmonologist.  She did and he suggested to give her the steroid and antibiotic.  If they would have given on Saturday she would have been better off.  I also had the pediatrician ask me “Have you ever done walk in visits before?”, I responded “Yes”, then she said “this case is a little too complex for walk in visits so next time you need to make an appointment”.  My response (as I sit there in SHOCK & PISSED) was “the nurse called me this morning and said they only had an opening with a NP and my child is too complex for that”.  

I just do not understand why some people are in professions if they honestly do not LOVE it! Also, NO ONE knows everything, especially about a child who has a syndrome that CHKD has never seen before.  It is so frustrating trying to make doctors understand.  I do have our few that are WONDERFUL and I am so thankful for them.  But when you go to an ER, Urgent Care, or Walk-in… it is like waving the white flag.  They do not believe ONE word you say and push you off as if you were a CRAZY lady.  Yes, I know I can be crazy but when it comes to my child I am pretty sure I know what is going on.  I do TONS and TONS of research on Bohring-Opitz.  I talk to moms all over the WORLD (even use Google translate to speak in German & Spanish).  I am just in shock on how much FIGHT you have to put in to get a CHILD the care they NEED! There is no guarantee in life and when your child has a rare genetic syndrome and the stats are not good, I need ALL doctors to LISTEN and HELP! I do not understand “Why it is so hard?!?!” I do know that I will NEVER give up the FIGHT.  I will continue to do whatever I have to so she gets the care she needs but something needs to change with the system.

Love,

Mommy of BOS ❤