Thursday, January 30, 2014

Cardio Update...


Raygen was such a big girl today at the cardiologist.  They did the normal.  Her height, weight, ekg and echo.  She did fuss a little through the ekg, but that is because she doesn't like the stickers placed all over her.  I wanted to get a picture of her during her echo, but she needed mama to lay down on the table with her.  We played on the ipad (best Christmas present ever!) and she rocked it.  She was such a big girl today.  So proud of her.
So we got good news and some scary news.  Good news first.  Raygen is looking and doing awesome!!!  Her echo and ekg looked great and her Oxygen level and heart rate (that I keep track of every night) are great for being 2 years into her Glenn.  The scary news is that WE HAVE TO  have a cath within the next couple months to have her stent looked at.  When Raygen had her stent placed, right after her Glenn right before she turned one, they told us she would need to have a cath again 6months to a year to have it ballooned.  Well it's been two years so its time.  I know its time, but that doesn't make things any easier.  A cath is hard on Raygen.  She is so hard to get iv access and getting cath access is even harder.  Her last cath it took them over an hour to find a place to place the cath.  Thank goodness they sedate her before they start poking.  Children's should be calling me next week to schedule.  I am thinking April.  I want to enjoy Raygen's 3rd Birthday and Spring Break before we make the scary trip to the hospital.  We are also going to schedule her MRI to do either before or after the cath.  It's all starting to happen.  
The cath will tell us what are next steps will be.  The cath will tell us if Raygen even qualifies for the Fontan.  Her body will need to be able to handle a certain pressure for the Fontan to be successful and the cath will let us know.  Also the cath will let them balloon her stent if need be and also get a close look at it.  Depending on the what the cath shows it will also determine if Raygen will need reconstruction of her left pulmonary artery during the Fontan which would make it a very difficult surgery.  Heart surgery is scary and this being Raygen's 3rd doesn't make it any easier.  This will also be Raygen's 3rd trip to the cath lab.  
I'm going to bed tonight holding my baby tightly.  
Thank you to everyone for all your prayers and support today.

xoxox

Erin