Upcoming Surgeries

It's been a while since I have done any updates on Kai.  Overall he is doing really well.  He's been healthy throughout the summer and other than some scary vent issues (like the ventilator completely shutting off on us), things have been pretty quiet.  However, we have some major changes coming up in the next couple months. 

First, Kai is going to have his third surgery on his ears.  Hopefully, if there is no sign of infection, this will be the last surgery.  If there is still some infection, then there will be at least one more.  If the infection is gone, they will work on reopening his ear canals and reconstructing his left ear.  I'm uncertain if they will attempt to replace the tubes in his right ear.  They may try--to help keep the right ear open. 

While he is in the hospital for the ear surgery, they will be switching out his ventilator--the old LTV for the newer Trilogy.  The Trilogy is the vent that they originally wanted to put him on, but it was still very new and he didn't meet the weight requirement at the time.  Fast forward almost four years and the Trilogy is now the vent most have and the LTV is old technology--as in they aren't even making parts for it anymore.  Yep.  That means when something goes wrong, we have to swap out parts from another LTV, and when you are talking about the device that helps your child breathe, it's a big deal to have quality (and not old/used) parts, as we've found out.  We are excited for the new ventilator change.

Lastly, Kai's scoliosis has gotten to the point of needing surgery.  His curve is between a 76-78 degrees.  Anything above 75 they recommend surgery.  Boo.  Super scary, because they will be placing rods in his back to help straighten out his spine.  The good news is, he is a candidate for a new technology called magnetic rods, which will negate the need for repeat surgeries every six months or so as he grows.  Instead, they will be able to magnetically lengthen the rods as he grows without cutting him open.  That's the theory, anyway.  It's still a relatively new procedure.  When he is done growing, they will fuse his spine.  

I'm not at all excited for this surgery, and even less so finding out that a child died during this procedure about a month ago (I think there were extenuating circumstances with the child, but it has put the docs in super cautious mode with the surgery).  Care for Kai is going to be harder, and moving him around is going to be more difficult.  The problem with just letting him be and not doing the rods is that his organs begin to get squished, especially his lungs.  Eek!  The ventilator helps with that, but we don't want the vent to be a crutch.  We will never be able to get rid of the vent (which is the goal) if his spine is compressing his airway. 

So, surgery is coming, and things will be changing.  Updates will continue to come, and hopefully all goes well!