The Cardiologist

Our cardiologist walked in and gave us a report on each of the kids.  Here's the deal.  Kate's aorta distention is currently a 3.11 cm.  When it gets to a 4.5 to 5 cm they start talking heart surgery.  He did say that he has never seen a child who has needed the surgery.  It's usually the adults.  It apparently takes a long time for it to reach a 5. Kate will be getting her blood drawn on Monday to check her liver and kidney functions before she goes on a medicine that is supposed to help slow down the aorta distention.  It is a blood pressure medicine that has been used for Marfan patients for a few years but is still in a trial phase.  I'll give more info on that medicine once I fill the prescription.  We go back to see the cardiologist in a month to see how well she is tolerating the medicine at a lower dose.  If everything looks good, he will start giving her the medicine at it's full strength.  I am assuming we will go in again and see how that is working.  We will also schedule her next cardiac echo when we go in next month. It will be six months from when she had her first one.

We got a report on Abby's cardiac echo as well.  I was told by the sonographer who did her ultrasound that she had a prolapsed mitral valve,  completely unrelated to Marfans.  I have basically spent the last two weeks thinking that Abby has heart issues as well.  The cardiologist told us today that it is so slight that he is not worried at all.  It's apparently a non-issue.  Being told that,  and really knowing that, are two different things.  I am trying to convince myself that he is right.

Noah, my one kid I thought would breeze through this,  actually has a slightly dilated main pulmonary artery.  And now we know that Kate does as well.  She actually has both the left and right pulmonary arteries dilated along with the main pulmonary artery.  So, in Noah,  this could be related to Marfans or it could be something completely different.  The Dr. is anxious to get the blood test back to see if Kate has the gene for Marfans because it will help figure Noah out.  That's the test that we are still waiting for our insurance to give us the go ahead and then it takes 8 weeks to get the results.  Either way,  Noah will be having another cardiac echo in a year to follow up and see if it's getting any bigger.  It's just barely off of normal, but given Kate and her heart issues,  we are going to monitor it. 

The kids are taking all of this information like troopers.  I think because I act like it's all good,  they believe it.  Good thing I am such a skilled actress.  I just keep hoping they don't catch me being teary and sad.  I have amazing kids.  So blessed.