"We are going to focus on LIFE for Katya. I believe, one day, she will amaze the world."

Dr. Ben Carson on Katya Dueck

Monday, April 29, 2013

Not So Hot News

In addition to the fantastic, totally thrilling news we received last Monday at Dr. Repka's about Katya's miraculous healing of her optic nerves/vision, we got not so hot news the next day on Tuesday at Dr. Dorafshar's.

He is ready to talk seriously about Katya's surgery--yeah, the one we had originally been told wouldn't happen for a few years yet. He would like to have it done THIS year yet.

While he was definitely respectful and made clear we called the shots as to whether it happened this year or not, it was clear he did prefer to do it this year. And he would like to do a lot in addition to the bone grafting from her hip to fill in the "soft spots" where bone wasn't able to grow post-op.

He's planning to seek a lot of counsel and input before he determines exactly what all gets done during this surgery, but he has a long "wish list" of what he would like to do. Some of it, especially tweaking around on her eye location, is "fairly complex" --and scarily risky.

It is going to be very hard, we are afraid, to know what we should agree to or not agree to, once Dr. D. and his team members finish compiling their "wish list".

It was easy to OK her cranial surgery, in the sense that we knew beyond a shadow of doubt that Katya had NO chance of a good future without that surgery. We were firmly and unswervingly committed to following through with it, and were ready for it even before Dr. Carson was ready to do it--back when Dr. Carson was telling us no, he wouldn't do it--it was too risky. He eventually came to agree with us that it had to be done, scary or not, and that there was no option but to at least try. And it was, as far as the actual surgery itself, smashingly successful, beyond anyone's hopes almost, although the recovery period was a big pain due to neglect and ignorance.

Now, Katya has issues that are not medically threatening that Dr. Dorafshar would like to improve or correct when he goes in to fill in the gaps in her skull with bone grafts from her hips. If he's going to be in there working anyway, now is the time to correct what other things need corrected. He said he doesn't think he can give her a 100% "typical" appearance, but he feels quite sure he can improve on what she has currently. It would be nice for Katya's sake to have her appear more "typical". On the flip side, is the risk worth it?? I don't know. We just don't know.

How could we live with ourselves if we said, "Yes" and she suffered complications that ruined what she has, or even died??

Until we have come to a place of peace about this and KNOWING . . . we are just continuing to pray. I know we need to do the bone graft surgery--but what else should we agree to? Or should we reject it all? There's a part of me that wants to play safe rather than sorry, but on the flip side, I don't want Katya to some day ask us, "Why didn't you give me a chance if he could have fixed that?!"

As one relative kindly told me, we will know . . . once we know. Yes. We will keep seeking God's wisdom on this one . . . Whatever decision we make, we need to be prepared to live with the consequences of it.

I don't feel that Dr. D. is being cocky or crazy--he's clearly trying to be very thoughtful and wise in his decision making process here, and I appreciate that completely. We just need to be wise and guided by God in ours as well.

Please pray for Dr. Dorafshar, Dr. Ahn (Katya's new Nuerosurgeon now that Dr. Carson is retiring) and the others who will be involved in the decision making process. And pray for us too . . . I know God knows. ;-)

In other news, Katya's case has been written up and has gone through the first step for acceptance for publication in a medical journal. Dr. D. has promised to make sure we get to see a copy when it is published. ;-) Her case history will also be presented at a large plastic surgeons conference this summer by Dr. D. I am hopeful that through these things, more Drs will be trained and able to better help other kids who have complex medical histories similar to Katya's. Something good better come from all that our daughter has been allowed to suffer. . . something good.


Christie Minich said...

Hard decisions!
The best advice I ever heard, was to not do cadillac surgeries to create cadillac kids.
Meaning.... if it isn't necessary, it is best to stay clear.

We could, if we wanted, to continue surgeries on our girls, but the cost would be
1. child hood
2. too much risk
3. the possibility of making something that functions well, non functional.

For Katya, if her sight is good, would you want to take the chance of her losing that sight, for a cosmetic procedure?

Our prosthetist says he has seen too many kids have too many procedures, and in the end, they are not much better off, if at all.

So, we go for function.

Praying for you dear family.

Milena said...

I think Christie Minich gives you good advice. I suppose the soft spots on Katya's head needs to be filled with bone - or else the slighest injury could threaten her life as far as I have understood your previous posts. But as for more cosmetic surgeries that doesn' t really improve any function I would agree that better safe than sorry. Your Katya is adorable without being typical-looking!