Monday, September 29, 2014

Seattle Check Up

Waiting to see Dr. Chun

She is watching her IPad.

She worked herself up so much for the ekg and blood pressure.
Zoie was so excited that Raygen let her hold her while napping.

Raygen fell asleep on Zoie while grandma gave them rides around the yard on the gator :)
So we were on the road by 5:30 a.m. today on our way to Seattle Children's to meet Dr. Chun, a cardiologist that specializes in rhythm issues and pvc's. Raygen had an ekg, blood pressure, and pulse ox done and all were fine. The funny thing is that Raygen had no pvc's on her ekg, but when Dr. Chun listened to her he heard one between every beat. This means at that moment she is having them 50% of the time. This in time could weaken her heart which is my biggest concern, but like Dr. Chun said it would take a few more test in a longer span of time to see if she is having them enough to cause damage. We are considering transferring Raygen's care to Dr. Chun especially if she continues to have pvc's because that is what he loves to treat. He said that if he had Raygen as a patient he would have her wear a monitor at least every 3 months to get a good idea of how many pvc's she is having and then decide treatment after that. As of right now we are leaving Raygen's care where she is till she is all settled after the Fontan, but it doesn't hurt to get others opinions and thoughts when it comes to care for your child. 
Tomorrow is a big deal for us because we are starting Raygen on her normal blended recipes again, meaning adding the fat back in. This could cause fluid to build back up in her chest so we will be keeping a close eye on her breathing and O2. Raygen is still struggling with her diet so I am really hoping going back to her normal diet and off the Lipastart her poor little tummy will feel better. She still is puking at least once a day and has this little cough that seems never to go away. I never realized it would take so long to get Raygen back to normal after the Fontan, but we are still struggling on so many levels. Sleeping, eating, weight, and overall activity. She still doesn't want to be very active. She is so content to lay and play with the Ipad and listen to her music. We have started to get her to try walking again, but she is very shaky on her feet. Next week we should be able to pick her up again from under the arms so that will be helpful. We defiantly have our good days and our bad, but were home and so blessed to have made it this far and so very thankful as well.