OK.. I know I haven't posted in a while, but Emily has been doing really well since her stent procedure. So we finally broke down and went to see the Orthopedic doctor to see what the next step was with her back - since we now have the heart fixed for at least a year or two.
Now initially they were touting VEPTR - since she was an "ideal" candidate for it. So I did a lot of research on that.
At yesterday's appointment (which I didn't go to) she tells my husband that her curvature was 67 degrees the last time they saw her (last summer) and now it's only 60 degrees. So she's not worse like they thought. The doctor thinks now that they should fuse a couple of the vertebrae together - which should hold her until she's a little bit older and then they'll do the VEPTR (she thinks). She wouldn't even discuss anything else - because they need to do a CT Scan to really get a good look at her spine/vertebras.
Now - has anyone had their child's vertebrae fused and then went on to have the VEPTR. What were the results - did you have more issues because of the initial fusion - if you had to do over again - would you have them just do the VEPTR?
As much as I like the thought of not doing the VEPTR this early - I'm really getting red flags about the fusion. I'm also concerned as she has fused ribs and how is that going to affect her lung growth.
If you were me, what kind of questions would you ask the doctor?
I appreciate any and all comments.