Sunday, September 7, 2014

Cardio Check Up


Waiting for X-Ray
Singing ABC's with Dad.
Waiting to see Dr. Park
So Friday we went for our first post-op check up and it was pretty rough.  Raygen is very sensitive to everything right now and she knows what doctor offices look likes.  She cried the entire day.  It was heartbreaking.  She screamed during the chest x-ray, which was clear :), and after that she just looked so sad.  We then went to Dr Park's office and Raygen had an EKG, blood pressure, and pulse ox.  Each one of those test are painless, but to a little girl just out of heart surgery they are scary and I think you could have heard her scream a block away.  They did want an Echo, but we said not today because she had already been through a lot.  She also had to have her finger poked to check her warfrin level, which was on the low side.  Even though the day was stressful everything seemed to be looking good.  Raygen's EKG looked good, although she is having a few PVC's which are making me a little nervous.  Even if it's normal for everyone to have a few PVC's it's a little nerve wracking with Dr. Park can hear them while just listening to Raygen,  Raygen does have pacer wires in case a pace maker is necessary, which I pray isn't, but only time will tell.  Due to the PVC's Randy and I have decided to make an appointment with a Dr. at Seattle Children's who specializes in rhythm issues.  I feel like I want us to be prepared and if need be caught a problem early instead of an emergency.  I will be calling him on Monday.  Otherwise Raygen's appointment went well.  There were no changes with her warfrin or her diuretics.   We will have another check up with Dr. Park on Thursday with an x-ray, warfrin check, and an echo.  Raygen will probably be seen every week for a whlie or at least till we get her warfrin level at a good spot.  Raygen will be on high doeses of diuretics for at least 6 months and Dr. Park said around that time we can discuss if we can transition Raygen back to aspirin instead of warfrin.  So many decisions to come in our future, but right now I am just grateful to be home.  Raygen is still adjusting to being home.  She is still no where back to her normal, happy self.  She still is too sore to stand or walk on her own.  She cries a lot and has a hard time sleeping.  Her sleep schedule is off and she cries all night and wants to sleep all day.  Tomorrow I am going back to work with my girls and hope she can adjust to being at the office again.  I know each day she is home she will get more comfortable again, but going to the doctor once a week is going to slow the process.  I hope she remembers that not every time we go in the car were going somewhere bad. 

xoxo 

Erin