After a lot of stops and starts for the last few years, and lots of various evaluations and second opinions (both obtained by Katya's plastic surgeon from mentors he trusts and by us from several medical professionals who have no "bone in the pot") the decision has been prayerfully made to go ahead with another major surgery on Katya's skull.
This will consist of several procedures.
#1. Removing some hardware from several locations that her body never was able to absorb from her surgery in March 2012.
#2. The more involved and serious part of the surgery will involve trying to patch several significant "holes" that remain in her skull from the major expansion in March 2012 that her body was not able to fill in with new bone growth. These holes leave her brain vulnerable to injury. Bone will need to be taken else where from her body to lay into these areas. We will not know for sure till Katya is out of surgery exactly where the surgeon will have taken bone from. He has discussed with us that he may have to take bone from the back of her head, her ribs and even possibly her hips in order to get enough bone to fill these holes.
Yes, we are aware that the more places he has to take bone, the more significant Katya's post op recovery will be. No, we don't like thinking about it. It makes me want to cry to think of putting her through this. But her surgeon's at Hopkins AND the medical professionals we have consulted all feel that this is the safest long-term course of action to take for Katya.
As per her CT scan in early June, Katya's skull bones remain only 50% as thick as the average person's, so her whole skull is fragile. Her general bone structure is small, so that makes this surgery tougher than it would be on an average person. We have been praying specifically for miraculous bone growth for Katya prior to her surgery on September 9th, and we would love to have you join in with us in prayers.
In addition to the procedures being done on Katya's skull, there will be at least one other procedure done while she is under general anesthesia--possibly more. We are being told that the surgery likely will be about an all day surgery again--similar to the 13 hours or so of last time.
She will likely have a lot of pain post-op we have been warned, and as her plastic surgeon, Doctor D, said so wisely, "This is Katya we are talking about, so of course we have to be prepared for bumps post-surgery!"
Please pray for our sweet Katya! We know she remembers enough about the previous surgery and the horrible aftermath that she will likely be quite scared this time. She understands so much more English than last time, that I hope it helps. She also has been with our family much, much longer than last time too. Over 4 years this time versus less than a full 9 months last time.
We also have some ideas to help prevent some of the complications post-op that happened last time. Paul and I have had a "chat" with her plastic surgeon and as he pointed out, "This time you have ALL of my contact information and you know how to use it even if I am not present in the hospital." Yes, that will make a big difference from last time when residents who were not listening seriously to my concerns were caring for her. I have never known Doctor D. to "blow off" carelessly anything I have shared with him about Katya, and we have a mutually respectful relationship when caring for her.
Were it not for that, and the fact that we do feel a measure of peace as we have prayed about this, I think we would run screaming in a panic the other way. I'm sure it will be an on-going challenge for our whole family as we proceed forward through the next few weeks. Pray for all of us as God lays it on your hearts.