Month: February 2011

Once again, ladies and gentleman, my vision has been reduced to a narrow scope.  I can see only what is in front of my face and nothing further.  I am, what seems to be, at this moment, hopelessly stuck in a sea of pixels and I can’t make out the picture to save my life.  Why?  You may ask.  Well, let’s see, Lucy was scheduled for her CT scan on February 8th.  As those of you who are in North Texas know we got hit with snow again on that day and the appointment was postponed until Monday February 14th.  (I wrote the preceding last week and I am doing better now but still not able to see much beyond my daily duties.  Every time I try to imagine what is in store for us I can feel the anxiety setting in.  So, for whatever reason, maybe I am just supposed to focus on one hour at a time, for now)

We had the appointment and Lucy did wonderfully.  She sat very still even thought she was obviously nervous and scared.  We did one test run, the guy let me strap her in, talk her through it, coach her to sit still and shut her eyes and did the scan on my command.  This part was awesome.  I was so proud of Lucy for sitting so still.  They said she is probably the youngest they have had sit still for the scan.  Thanks to all of you for your prayers for her to be wiggle free!!

Afterwards I met with Dr. Sinn (the surgeon we last consulted with in October) to go over the results.  Since our last visit he has changed his mind on the approach he would take for Lucy.  He now says he wouldn’t do the rib graft as they tend to re grow back together.  He would recommend still removing the jaw and putting in an artificial joint.  Then when she is done growing. sometime in her teen years, do the rib graft then.

At the time of the appointment I was exhausted as I had just returned from out of town and coming down with a cold so I didn’t question his change of mind/inconsistency.  I just sat and listened and took notes.

On the scan he saw what seemed to be signs that her other side is possibly ankylosing.  Nothing was concrete but, none the less, he recommended removing that jaw as well.  I did get around to asking if he could just remove the one side first and see how it goes as it seems obvious to me that the only reason the other side would be laying down bone is because it has no movement.  If you can get the movement going the body will stop this process.  Anyways, he said what he would do is remove the right side first and see how much range of motion he could get, in the operating room, before deciding to remove the left.  Yippie!

I also did ask him if anyone has ever tried to remove the extra bone and salvage the joint.  He said this would be a much more technically difficult procedure so it isn’t done.  Also, he said the therapy would be very painful, but he later said she would have to do very painful therapy after having the artificial joint put in.  So, what the difference is I’m not exactly sure.  I do know the chances of it re ankylosing are higher if we debridement the area instead of removing the joint.

These are all things we will have to weigh heavily.  At this point, I am in no condition to make a decision.  I know it needs to be made in the near future, I’m just hoping God will show us a coherent, consistent option.  As of right now, we have consulted with three different surgeons who have three very different opinions, two of which have changed their minds over the course of appointments.  I kind of feel like I’m on that game show with the three doors, “Let’s Make a Deal”, taking a chance at winning a car over a diamond ring over a waffle iron, except the welfare of my child is what I am risking.  Or maybe I’m on the movie Brazil…

I still need to consult with the last Dr. we saw before the CT scan.  He was waiting on the results of the scan to see about some non surgical options.  However, I did meet with one of the other Dr.’s, who has been helping us with Lucy’s therapy, with the results of this new CT scan and his opinion is that non surgical procedures are most likely not an option at this point.  There seems to be too much bone to do anything other than surgery.  He does, however, agree with me that looking into cleaning the area up and trying to salvage the joint is a viable option that should be researched and weighed.

For now, I will take it one hour at a time and see where God leads us next, trying very hard in this process not to get discouraged and frustrated.  Those of you that know me well know that I like to be in control of things.  Right now I’m not!!  Did I seriously need this big of a thing to break me from this iniquity?  That is totally a rhetorical question, please don’t answer it in the comments!!

In Christ’s Peace,

Katie Guy