Thursday, September 19, 2013

Cardio Update

Raygen had her Cardio appointment on Tuesday.  These appointments are always so scary for me.  The worst part is that her appointment was in the Olympia building and that is where I was told Raygen had HLHS.  This was the first time since Raygen was born that we had her appointment in Olympia. So while she was laying on the same table I did having her echo it was emotional. 

She was in a great mood before the doctor.  I should have taken some "after" pictures but she got herself all worked up.  She was tired, hot, and sweaty when we left and plus we drove home kind of in a daze so pictures were the last thing on my mind.

I do love this happy girl. 

So we got the news that we kind of expected was coming.  Her 02 was lower she was 78 to 79 and normally she is around 83.  This could be that she was crying so hard and just needed time to build it back up or this could be one of the signs that it's time to start talking about her next surgery.  Dr. Park said her echo and EKG looked great and that Raygen looks the best he has ever seen her so that was fantastic news, but, (there is always a but) it is time to start thinking about another lung scan or a cath.  Dr. Park is emailing Dr. Jones at Children's to get his thoughts on what test we should do.  Dr. Jones placed Raygen's stint in her heart after the Glenn and thought it would need ballooning within 6 months to a year and this December will be 2 years so it's time to get our girl checked out.  They will also need the information from the cath for the Fontan and to make sure that Raygen qualifies for the 3rd surgery.  It all depends on the pressure readings that they get from the cath that will tell us if are next step is Fontan or transplant. 
So now we play the waiting game.  Dr. Park will let me know what he finds out and then we will schedule test and appointments accordantly.  Dr. Park did say that he felt next spring or summer would be time for Raygen to have the Fontan so that is scary.  I know after the Fontan her o2 should be about 95 and I bet she will feel better and have more energy, but major open heart surgery is so scary especially when it is your beautiful two year old daughter. 
Thank you for all your prayers and support.  I will keep you posted on what our next step will be once I hear from Dr. Park.
"That which does not kill us, makes us stronger."