Monday, March 17, 2014


Getting back into the swing of "normal" life is wearing me out, but that's a good thing. I just don't have as much adrenaline as I did for a few months there.

Since tomorrow marks three weeks post-op for Emily, I should probably explain what is actually going on (since I did nothing of the sort in the last post--I was over-the-moon ecstatic and pretty much incapable of forming coherent sentences).

All of Emily's six surgeries failed. At the final surgery only about one-third of her flap had grown into her palate. She is left with a hole that is actually larger than it was going in because of some of the work that was done. At the moment, she has nothing in her mouth but a few sutures. Her tongue flap was removed from the roof of her mouth and re-inserted into her tongue (yes, it's just as weird as it sounds). Apparently that tissue would not grow back if it was not re-inserted (i.e., if they just cut out the tongue flap and threw it out) and then when the time came to try again we would have to try some really wacky and scary things to try to close her hole. Thankfully(!!), the tongue flap re-insertion appears to be healing well and the sutures are almost all dissolved. Em has a bump on her tongue where that tissue is and the bump may remain until they try again.

At the beginning of April, Emily will be fitted for a new obdurator (retainer) that will block her open palate and improve her speech and eating. In a few years, we will try again.

Things we learned:
  • Emily does great with total intravenous anesthesia (TIVA). Any use of gas makes her really sick, but by the second-to-last surgery we finally hit on a way to keep her from feeling nauseated or puking. :)
  • We will definitely do the hyperbaric oxygen therapy again. That did seem to help her healing as she had the most healing after the second-to-last surgery and the use of the oxygen.
  • We will definitely wire her jaw shut again. She has the strongest mouth and tongue of any person I've ever seen. I think she might be able to pull a monster truck with it (all while holding a conversation with anyone in earshot). She missed out on talking the first three years of her life and she's not about to stop for a few measly surgeries. 
I'm really, really glad to be done with the last few months. If I stop and think about it I'm really upset that none of this worked. Emily went through a lot only to be back where we started--possibly even further back than when we started. I don't understand how this could be part of God's plan for her.

But the reality is that it is God's plan for her, and for us, whether or not we understand it.

And at least next time the other kids will be old enough to stay home by themselves. ;)

1 comment:

Anonymous said...

So glad she is healing from the reinsertion, yes it all sounds strange. Glad life is back to normal for a while!