Thoughts gathered, hopefully

I know a lot of people have been waiting to hear how our appointment in Kansas City went.  I have had to gather my thoughts together and coalesce all the information before being able to spit it out and share it with y'all.  I thank you so much for the prayers, they were answered in so many ways. 

First we had our ENT appointment. The doctor remember us from 3 years ago when we got Kaedra's tubes put in. I thought that was pretty amazing! Or course, Kaedra is pretty amazing, so maybe that is why she is remembered. :-) The surgery to close her trach hole is a little more complicated than we thought. The doctor will be first stitching the trachea, then the muscle layer, then the skin layer. There are a few very bad side affects that can happen from the surgery, so she will be kept in the hospital a few days to watch her carefully.

Next we had our appointment with our surgeon, Dr. Nigel Price.  The appointment went WONDERFULLY and really quelled all my fears and settled any problems I had with his program.  We were able to talk a little about where Kaedra is headed in the next 10 or so years and what we can expect along the way.  We also talked about our overall goals for Kaedra by being in the VEPTR program: to increase her lung space and give her rigidity in that chest wall. It does not look (at this time) like she will need any VEPTR rods to straighten her scoliosis. Her curvature is relatively minor (31%) and has not grown very much. If it was to grow, he thought it would be when she hits puberty.  If so, we would discuss what to do at that time: ie VEPTR or spinal fusion. Plans were made for Kaedra to have an expansion on May 21st. 

Our last appointment was with a plastic surgeon. Because of the lack of skin and muscle across her back, any further surgeries really have the potential for the titanium rods coming through.  (like one did a few summers ago)  The plastic surgeon is going to assist in the surgery, hopefully decreasing that potential.  He will also put a layer of artificial skin in between the rod and her skin.  He is hoping that one time will be enough to make the skin thicker but he said that if it wasn't he would continue to do the same thing at each surgery. 

All in all, we got a lot of information and we were happy with all the appointments. Thank you so much for your prayers!