So, I've been up since early this morning making phone calls. I also stayed up late last night researching Cardiology clinics at the different Children's Hospitals. Children's Hospital of Boston is ranked #1. I called and spoke with a nurse in the Cardiology clinic this morning. She was WONDERFUL and told me to fax Baylee's EKG results to her. I called her a bit ago and she just got them so she was going to find a Dr. to read them. She said sometimes there can be false positives so she wants them to look at it to be sure. She also told me I needed to get her Echo moved up from May 20th. So, the Super Mom that I am DID JUST THAT! She will have an Echo tomorrow here at the local hospital and those results will be sent to Little Rock Children's and I will also get a copy to send to Boston to have them look at it as well.
AR Children's Cardiology is ranked #28 and St. Louis is ranked #17.
Whatever it takes I'm getting it done for my daughter. If that means getting on a plane and flying to Boston to get the best care for her that's JUST what I'll do!
Hugs - Tiff
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I spoke with the nurse again this afternoon and she is going to call our Pediatrician to get our Echo. They are starting to upset me. She said that the Cardiologist looked at the EKG and it has been confirmed that she does have Right Ventricular Hypertrophy. Echo is next and then we go from there... Once again I'm requesting LOTS of prayers!
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Echo is tomorrow morning at 9am! It's at the Lowell Clinic (UAMS Center for Children - part of AR Children's). From there the results will be faxed and mailed to Children's Hospital of Boston where the nurse will call me back tomorrow afternoon for the results. I spoke with the nurse again a minute ago and I did ask what causes this... if she was born with it, etc. She said there are no known causes, but that would have to be something we discussed with the Dr. Fair enough. Either way we are getting some results tomorrow and that makes Momma HAPPY!
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7 comments:
YOU GO GIRL!!!
Good for you! I'm glad you got the appt. moved up! :-)
My thoughts and prayers are with you and your family!! Just keep doing what you do! You're an amazing lady!!
I am so glad you became "the squeaky wheel" and got some action.
One thing I have learned over many years of working for and with doctors offices, DO NOT let them intimidate you. You are the only advocate your child has. Imagine how you would feel if something happened because you didn't speak up and get the testing done quickly. You would never be able to forgive yourself.
That thought has always motivated me to reach for the moon when it comes to my kids.
I will be eagerly awaiting your follow up!
praying for you guys!
Found this great info on the condition in children and apparently it may even be reversible!
http://www.medhelp.org/posts/Maternal/right-ventricular-hypertrophy/show/860752
ROCK ON!
I love me some tough mamas!
xo
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