Yesterday Raygen had her 6 month cardiologist check up. I look forward and dread the cardiologist appointments. I need to be reassured her heart is okay especially since she can not tell me if she "feels" different or if she is more "tired" then normal. I'd like to think that I would notice quickly if something was off, but there is always a chance I wouldn't.
Good News to report though. Raygen's heart looks great. She screamed through the EKG, like normal, and the pulse ox so it was showing that she had a lot of pvc's and her oxygen level was 85. Her normal oxygen sat is usually 90 to 93 so it was lower, but I think it was because she was crying so much so I'm not going to stress on it. We know she has the pvc's, which are extra little beats, between the regular beats of her heart and we are just watching them. We wouldn't treat the pvc's unless they started to affect her quality of life or her heart function and neither is happening now.
Dr. Park is going to call and refer us to Seattle Children's so Raygen can have a wireless heart monitor for a 24 hour day and then we will be able to see more clearly how often she has the extra beats. This will give us a good base line to compare to future test.
Otherwise Dr. Park was very happy with Raygen. There was no changes to anything. She will go back in 6 months for another check up and at this time have labs and an x-ray. He even mentioned if everything looks good on the next appointment going to once a year check-up. I don't think I'll do once a year, but he can try to convince me.
Dr. Park did mention that in Raygen's future, usually around the age of 10, she will need to have an MRI of her liver. This is around the age they start to closely watch her for liver failure or liver cancer. There is an up side to the Fontan and a downside. It just proves that Raygen will have some bumps in her future and she will never be "better," but one thing she has proven time and time again, she will always be AMAZING!!!
Thank you to everyone who continues to pray for our family and Miss Raygen. She truly is an amazing little girl and we are so very lucky.