As promised, the report from our conversation with Dr. Dorafshar after we have had time to process it . . .
Katya is going to need more surgery. We had been warned that due to how little bone they had to work with to try to expand her skull compared to how much her skull needed to be enlarged, we could easily end up with "gaps" where not enough bone could grow to fill in the expansions. That would mean that Katya would need bone graft surgery to fill in those gaps. This was described to us initially by her surgeons prior to her cranial vault and expansion surgery as a ugly, very painful surgery that they didn't like to even think about having to put Katya through.
Lately though, we had been suspecting that we were looking at that, and Dr. Dorafshar confirmed that at this last appointment. Katya has several areas--one being a fairly large area to the side of her eye--where she has nothing but dura protecting her brain. Not much protection, as our family doctor soberly pointed out on Wednesday. His face looked thoughtful, and he very soberly said, "A fall and hitting that area on something like the corner of a table could kill her. . . . " Deep breaths. Deep breaths. Yes, we have been aware . . . it's the reason the school has strict orders to call us if there are any falls or blows to her head. . . . we live on a high level of alert all the time with Katya.
As you can imagine, this was a big enough blow. The next one was that Dr. D. confirmed something else we had been suspecting--it appears as though Katya's right eye has been pushing forward more and more. Dr. Dorafashar checked things out carefully and agreed that it appears that it is, and that we are probably looking at another future surgery to relocate that eye properly back into the socket. He said that due to the extensive amount of surgery they had to do, things are going to shift and change as her brain grows in new ways and her body tries to adjust . . . This is called remodeling, and while we were aware that some of the changes we were seeing were that, we weren't sure if the eye shift was related to that or not, so at least this set our concerns that it was possibly something more serious at rest.
The bony lumps that have begun appearing on her skull are from her body trying to heal the cuts in her bone. Think how a broken bone can grow too much bone to try to heal itself. That is what we have going on with Katya's head . . . Dr. Dorafshar said some day in the long and distant future when she is much, much older he would probably recommend surgery for that too to try to smooth and neaten things up. But it's not anything that needs prompt attention. So we can draw a breath about that for now.
Also, Dr. Dorafshar gave us a referral to a "world renowned eye Doctor" at Johns Hopkins to get more evaluation for Katya's eyes. Her left eye that was relocated stopped tracking properly with her right eye and so that needs attention as well. Because of how complicated her medical history is, and how that eye was already surgically relocated, Paul and I had been talking about how if she needed more surgery we would like to have it done at JHH just so her other surgeons would be available easily for consultation and input. Having Dr. Dorafashar bring this up and ask if we would like a referral felt like a confirmation to us of what we were feeling in our hearts. Isn't God good to provide guidance for us?! I'm guessing, based on what we know, that until Katya's skull issues and eye relocation issues are all resolved, we aren't going to be facing surgery for stabismus. But we'll see if any thing is recommended such as patching etc. and hopefully get a better idea of exactly what is going on and what they expect will need to be done to take care of it.
So while we got a lot of not-so-good news . . . and we are needing to just go back to God again and again for strength and peace as we look ahead to the future with more significant and serious surgeries, we also got one very big ray of cheer from Dr. Dorafshar--"Given every thing we had to do, honestly she looks phenomenal!"
One thing else that we are very thankful for?? Any time you have to begin working with a medical professional, especially one who is just "assigned" to you like Dr. D. was to us by Dr. Carson, you have to learn to know them, and they have to learn to know you. We had very little "getting to know you" time with Dr. D. prior to Katya's massive surgery, and our interactions especially immediately after that were usually ones dealing with her latest crises. And then of course, there were the . . . umm, ISSUES . . . shall we say . . that we had with his residents?! All those things made for some interesting relational things to be dealt with. But he hung in there, and we hung in there, and the good news is that over time, I believe we have achieved a high level of mutual respect and confidence in each other and our mutual concern for Katya's best well-being. This last exam felt like there was a high level of comfort and ease swirling around in the room, and clearly we are on the same page with each other. This is a good thing, especially since it looks like Dr. Dorafashar is going to be playing an important role in Katya's life for some time to come yet.
And for that, I'm very grateful. Katya's needs are challenging enough that we need to feel a high level of ease with her care providers. I'm grateful for the sacrificial care Dr. Dorafshar has shown repeatedly for Katya and for the fact that he is willing to respect us as Katya's parents and work with us as he is. It is good. It is very good.