Wednesday, June 11, 2014

24Hr Heart Monitor

So Raygen had a busy day today.  We went and had another EKG done and today it looked normal.  Dr. Park said that this is not uncommon for chd children to have moments of abnormal rhythm.  Raygen then had the heart monitor attached to her and she will wear it for 24 hours then we will take it back to Dr. Park and he will read the information.  This should tell us how often Raygen's heart has any abnormal rhythms and when.  After Dr. Park reads the information he will pass it along to Seattle Childrens and Raygen's new surgeon Dr. Chen, I believe.  We should be getting a phone call by next week to set up a meeting with the surgeon and schedule surgery.  This shouldn't affect moving forward with the Fontan, but may require that pacer wires are placed during the surgery in case they are needed later on.  It is a lot to take in and preparing for a huge surgery is always scary.  Raygen may be little but the girl is fierce!  Her GI Doc appointment was less dramatic.  She weighs finally over 30lbs so we are cutting her calories down a little and her new tube looks good.  Next time we go they will walk me through the steps on how to change it, but I'm not going to worry about that till after her surgery.  Now we just pray and wait.  The waiting can be so hard, but I really want to appreciate this time we have together.  I just hope I can keep Raygen busy tonight so she will keep the monitor on.
Thank you again to everyone for the encouraging comments and prayers and love sent our way.  They truly help all of us and I am so grateful.