Friday, June 20, 2014

July 14th and August 21st...

Yesterday was a busy day for us. We met Raygen's new heart surgeon Dr. Chen and we are moving forward with the Fontan and it will be done August 21st. Since Raygen has a cold we needed to schedule the surgery at least six weeks out and is 8 so hopefully my girl can get healthy and stay healthy. Needless to say we will be living in a bubble again till after surgery. The doctor saw no reason to do another cath due to the rhythm issue. Dr. Chen also stated there is still a possibility that during the surgery they may place pacer wires in Raygen's chest for future use. He won't know for sure till surgery and see how her heart is reacting. As far as the stent, his goal would be to slice it down the middle like a straw and patch the opening to make it bigger not necessarily take it out, but if they can take it out he will. There are no straight forward answers here. Nothing is for sure till she is in surgery. That is one of the most frustrating parts.
We also saw ENT and Raygen no longer has ear tubes. Both are out. They took her right one out yesterday because it was just sitting in there. There is still fluid in Raygen's ears and they are "not happy" the doc said so Raygen will have another set of ear tubes placed on July 14th. We felt that it was worth doing before the Fontan because Raygen's ears are not improving without them and being on antibiotics all the time isn't too healthy either. So a lot is happening, but first thing is first, we have to get Raygen over this cold.