Wednesday, February 06, 2008

Cast Four - A CURE

We had an awesome, awesome experience in Birmingham.

First, we met with Dr. Khoury, his resident, and Kara in the clinic. He looked at our x-ray, but we only had one from June because Chicago STILL has not sent them our films. But, by Tuesday that was moot because Dr. K had his own.

We talked a lot about the prognosis. To recap, Jack's first (Miss Mehta applied) cast did not hold the correction. He started at 70° (right thoracic). In the first, by the time it was removed (same hour) it was back up. Dr. Sturm told us that casting doesn't work for every child and that we may be just using the casting as a brace until he could have surgery at age three. Cast two got him down to 28 in the cast and his out of cast x-rays were down to 47°. The third cast got him down to 22° and Dr. Khoury had us cut it off at home. He said that it can be off for up to a week without causing any problems, and that it gives time for the skin to heal.

I asked Dr. Khoury what happens from here. He said that starting with a 47° curve (presumed) at 18 months is very late. He mentioned that Jack had a slender build and that he may not have a very flexible spine (I forgot to ask after the casting). I said, "When Jack was diagnosed, we were told that a curve over 50 was a surgical curve. What happens if we have a relentless curve down the road? Does it then transition to a surgical curve?" He said no. He explained that one instance of no improvement doesn't phase him. He will do it three times before he considers it unrelenting. After the third time, he believes that it will no longer improve and then we move into a night brace. He said, in a case like that the curve will often very slowly continue to get worse in a brace and then we can go back to periods of casting if necessary. Then, at age 8 (which he said is best for this) again - IF he had a curve that deteriorated in a brace - they would just do a spinal fusion. But, he said that is if we get up to like 80 even in a brace. I wanted to hear worst possible case scenario. HOWEVER - this is working! We are SO thrilled. We know that this is nothing short of a miracle. Our son, whose curve was SEVENTY DEGREES six months ago - four months ago, even! Who we thought would have growth rods at *three* - we were told now will not EVER need growth rods!!!!!

Okay, so back to our days...
Dr. Khoury does x-rays under sedation to get better numbers, which we LOVED. Jack is completely traumatized by radiology now and has to be forced to stand, all while he's thrashing around. He said the numbers are far more accurate that way, and we totally agree. They were able to take him back 40 minutes early and we requested Versed, but Jack didn't seem to react to it. We carried him to the doors and the nurse took him at which time he screamed hysterically, reaching his arms up for us. I don't know what went wrong, but he didn't appear sedated or loopy like he usually is.

The casting didn't take long at all. Dr. Khoury came down to our room within 45 minutes and showed us his films...
Prior to this cast, he was down to 38°!!!!!! That is a ten degree improvement from out of cast 2! Dr. Khoury got his curve down to 22° - but, what really sent me reeling was not just the number, but the appearance! His shoulders were level, his pelvis was balanced. Instead of having that sharp C in his spine, where the apex is, he now just has a balanced and gently rounded curve!!!!!!! It is AMAZING - I almost cried looking at it! I can *see* now how this is going to go and I'm just in awe of his work. Every other time it was still a sharp turn in the spine, but more internal to his body. This looked like an entirely different child!!!!

The cast itself is very different. It goes under the arms - very high. Dr. Khoury said every inch is essential and he will put up with skin breakdown as long as there are no open sores. He said the arms can be up high under the arm, even causing them to "walk like a wrestler" - but that it helps that way. His cut outs are so different - and there is a tremendous amount cut out on the opposite side - which just seems logical to me looking at his curve. Jack came out of anesthesia the most alert he ever has, and the anesthesia team there is SO great! Everyone there was so great. We had some delays in trimming - we were told they would petal his cast in the OR and they didn't finish, so we had to walk down to Will's clinic and have him do it there (which took over an hour) but I hope that it will improve next time.

Jack seems so happy today. He's throwing balls around and playing with his sisters. He doesn't have any residual grumpiness and has total mobility in the cast.

The drive home sucked, though - we drove through tornadoes, I'm sure, and there were several times we had to stop on the side of the highway until the rain eased up. There were overturned tractor trailers in a few spots on the highway in Illinois and something that happened to a train near the highway, too. It was crazy! But, we made it home safe and sound after a veeerrry long drive.

Thank you all for your support and hugs!

1 comment:

Wittenauer said...

Thank you, Sandi, for posting all of this information. I worked with Vicki years ago at Ralston, and she has been keeping me posted as well. My 7-year old son, Joshua, always prays "for the little boy with a curved spine." I showed him the pictures tonight and tried to explain what is going on. He just said, "It looks so much better. He looks happy." We pray for Jack all the time, and for his very strong parents. You are going through this amazing, difficult, trying, sad, happy, frustrating, exhausting time and I can only pray that you are all remaining strong and keeping focused on Jack's progress. Vicki is right, kids are resilient and he will make it through this and have his wonderful parents to thank! God bless you all.

Staci Wittenauer

I spy



FEEDJIT Live Traffic Feed