Saturday, March 3, 2012

Update on Kade.....Sometimes the harder answer may be the best answer

Warning, this post is long.

Sunday morning we flew out to Baltimore to seek a second opinion for Kade and his surgery that he is needing to treat his Chiari. We were hoping for the surgeon to either be in complete agreement with the surgeons at Childrens or to offer a safer alternative. Kade is completely clueless at to what is really going on right now. He has not once questioned why we go to the doctor all the time. All he knew about this trip was that he was getting to fly on an airplane and for that reason he was so excited. He just looked out the window and giggled the whole time. I am so thankful at this time for Kade's easy going little personality. He has been such a good sport with everything that is going on. He has even offered his little arm out for bloodwork to be done on two occasions, tears rolling down his face, but not putting up a fight. Here is a picture of Kade below. You can just see the wonderment on his face as he is looking out of the window of the plane. I just love this little face!

We landed in Baltimore and the words that came to mind after about 30 minutes of being there were, "Toto, we are not in Kansas anymore." Total change in scenery. As we approached downtown Baltimore where we were staying, we quickly realized that we were the minority. The city looked very, very, old. Although the building architecture was beautiful, it was absoultely spooky. I felt like we were in post apocalyptic Gothic City, with us being the minority. There were alot of homeless people walking the streets, alot, steam coming up from the sidewalks, trash everywhere, it was loud with firetruck and police sirens, and the air even smelled different. We ventured out one time, down to the harbor, and quickly back to our hotel room, where we slammed the door behind us, double locked it, and didn't dare come out, until our appointment time.

We got to Kade's appointment and Dr. Jallo was in and out with us in about 10 minutes, explained that he never starts out doing the fusion and decompression at the same time, and after reviewing Kade's records he would do the same in his case also. Although, it could be possible to later have to go back to do the fusion. Just not both at the same time. Whew! Okay. Although the appointment was brief, he gave us an easier answer. After all, that is what we were looking for. A weight had been lifted off of me, we felt so much better, so back to Alabama it was, to see if we could get the Alabama surgeons to agree.

We headed to Children's the next morning. Kade had to be sedated and have a CT done of his cervical spine to try to see some better images of the area. Then we met with Dr. Oakes and Dr. Rozelle. Dr. Oakes talked some, and then asked if we had any questions. I said, "Yes, I do. We have had a second opinion that recommends decompression only. Explain to me in your opinion why that would not be an option for Kade." He walked out of the room went and got Dr. Rozelle and we all four sat down with Kade's MRI. Is was at that time that I found out the Chiari Malformation was not Kade's main issue. His main issue is that when he was born the bones where the skull and spine come together were deformed in such a way that there is a certain bone in which is angled toward the back of the skull in a way that is putting pressure on his brainstem, and removing that actual bone is not an option. Instead we are going to have to remove a piece of skull and some parts of the vertebrae, try to shift the skull and spine in such a way that the pressure is taken off the brainstem and once that is achieved fuse the remaining part of the vertebrae to the skull. Freeing up this room should also help with his Chiari Malformation and allow the cerebellar tonsils to go back up into the skull rather than being where they are now, which is falling down in the spinal canal below where C2 is located. They explained if you only do the decompression from the back and free up that space, that it could shift so much pressure on the brainstem to the front, that we could lose his ability to breathe, and possibly not be able to get that back and that is why they disagree with Dr. Jallo at Johns Hopkins and absolutely refuse to do decompression only. At that time, Dr. Oakes looked at us and said that we need to decide where we want him to be treated at. After a thorough explanation of what was actually going on we told him we felt as if we were in the right place. He said to give him a week from Monday, because he was going to have to sit down with Dr. Rozelle and do some planning.

That was on Tuesday. Late Thursday afternoon I got a call at work from Dr. Oakes' nurse and she said after Dr. Oakes and Dr. Rozelle sitting down together and talking alot, that they wanted to admit Kade on Monday morning and get him started on a halo traction system and do that for about a week, and they need to know if you would be willing to do that? Of course I will. I will do whatever is best for him. So, we went back to Childrens on Friday morning, got measured for his halo device, and got some pre-admit labwork done. We seen Dr. Rozelle that day and he explained to us that the halo would be attached to his skull in six places and that it is attached with weights to the back of it that actually works like a pulley system, to try to see if they could get some more room in the area they are going to operate on. They will repeat his MRI after about 5-7 days then make final decisions on how to do his surgery. They think they will be ready for his surgery on Monday, March 12th, and that it would probably be an all day surgery. Once he is admitted on Monday, he will not come home until after his surgery. I also found out that day that on one side, his C1 is actally fused to his skull and on the other side, C2 and C3 are practically almost fused together with just a slight sliver of disc in between.

I never thought that going in on January 4th to have a simple sleep study could lead us to this point. As a mother it is so heart wrenching to know my sweet baby is having to go through all this. I would give absolutely anything to be able to change places with him. All we can do at this point is just to turn it over to God and let him handle this situation. After all, he is God's child that we so luckily and undeservingly got chosen to be his earthly parents. Please continue to pray for our family and for Kade's healing.

1 comment:

  1. Wow. Thank you for the full explanation. As a mom, my heart is aching for you but I am so proud of you and so glad that you have the faith to put Kade in God's hands. I'll continue praying for him, you (and your family) and his doctors. Please keep us up to date!