Tuesday, November 20, 2007

Scoliosis - Surgery Day

Guess what happens when you throw up in the presence of your anesthesiologist?

He cancels your surgery. Wow. What a turn of events. We were all so ready in every way, mentally, emotionally, spiritually. It has been a long journey and I think we were all ready to have some type of attempt at correction.

I'm not sure what the reasoning is/was, but God apparently had other plans today. I am so thankful that He is in control, and I am not.

The timing of it all was very dumbfounding. We arrived at the hospital, got checked in, got A into her gown and ready for the first part of sedation. The anesthesiologist comes in, and had really said no more than 5 sentences and A throws up. Then she throws up again.

She went from appearing perfectly fine, to not looking so great. Her temp was checked and it was 101.5. Unbelievable. We really could not explain it. There was no warning. It appeared to be anxiety related, but after discussing things with the surgeon, the anesthesiologist made the call to cancel for today.

So, we loaded back up and came home. We are waiting on word from the scheduler as to when we can reschedule.

Thank you all so much for riding on the roller coaster with us. We're trying to process everything, but are so thankful that God knows what He is doing. I'm glad He can see the big picture, and saw that today wasn't supposed to be the day.

Thursday, May 10, 2007

Scoliosis - the early days

We got a call from A's doctor today, and her surgery is scheduled for November 20th. (That gives me 6 months to plan and save for my getaway. Just kidding. Kinda.)

What we have now decided to do is to put in a titanium rib. There was a story in Reader's Digest a couple of months ago about it. It is fairly new, but appears to be our best option at this point.

There is a website, www.veptr.com, which gives info on it. There are pluses and minuses with it. The main plus is that the surgery will not go near her spinal cord, nor her spine. The device attaches to her ribs/hip. It is also not permanent, which the fusion would have been.

The biggest minus is that the device has to be adjusted every SIX months. That means surgery every six months until she is done growing, which will be when she's 14 or 15. And it's not out-patient. It is put-to-sleep surgery. So we're looking at 20 surgeries over the course of her childhood. At that point, then we will look at fusion.

It really is a whole lot more in depth than what I've described. (I still don't understand it all, but I feel good about the decision. Still don't want to do anything but run away, but that's not the greatest option either.) I'm just trying to give you the highlights. It really is the best option that we have for treatment right now. My hope is that something new will come along that is even better while we are buying her some time. Obviously my #1 choice would be that God would just heal her. It definitely would not be a miracle wasted.

Thursday, March 1, 2007

Scoliosis - the early days

We took A back to her doctor yesterday. We were scheduled to go in May, however, we have noticed significant change over the past few months, so we were able to get in earlier.

Both of her curves have progressed a great deal. Her major curve went from 69 degrees last February to 84 degrees now. Her compensatory curve, which is the one in her lower back, has also increased, but that is really because her body is still trying to keep everything in line. Her lower curve is in the 40s now.

This really was not a surprise since we had watched how she has changed. What was a surpise was the course of treatment he is now recommending.

Up until now, the best course of action was going to be go in and try to remove some bad vertebrae, fuse the area that is curving and place rods in her spine. This obviously would be a permanent procedure.

He is now recommending another option, which would be to place a device in her called a "titanium rib". It is also called a VEPTR, which stands for Vertical Expandable Prosthetic Titanium Rib.

The VEPTR is a fairly new thing, only approved by the FDA in 2004. It is used to expand the rib cage to allow the lungs adequate room to grow. That is really the main concern for Abigail, that because of the way her spine is rotating and curving, there will be stress placed on the lungs.

There are only a handful of doctors in the country that are approved, or have used it. Our doctor has done two of these procedure (not sure if they were at Baptist or not), and has 3 in line ahead of A.

There are pros and cons with the new option. The main pro is that there is not a significant risk with the surgery, as with the other option. They really will not be near the spine if they use the VEPTR. There are minor risks, but just the basics that come with every surgery.

The cons are that it is not a "one surgery and we're done". The VEPTR has to be expanded every 6 months, basically for the next 10 or so years, until her trunk is done growing. So we are looking at potentially 20 or more surgeries just for expansion. Who knows what that means as far as insurance goes. I have the feeling that she will reach a lifetime max fairly quickly.

So we probably have more questions than answers at this point. I just wanted to give you all an update on where we're at right now.

If we go the VEPTR route, then he would like to do the surgery w/in 6 to 12 months. We are thinking fall of this year. He is still forming his team that will be doing these procedures with him, and it sounds like it is more entailed because of the newness of the procedure.