We had a great trip to Columbia. It was not a bad drive and Jeremy tolerated it really well, he was a trooper. I was going to take a picture of the backseat before we left and then when we got home because no one would believe that he literally shredded 3-4 magazines, but whatever it was fine. I just cleaned it all out. I think we almost got kicked out of the Ronald McDonald house, Jeremy got away from me one time and was not in arms length of me and the house person let me know that was not acceptable. Jeremy can get out of arms length from me at any time. I was grateful to stay there it was so close to the hospital. I however felt like I was at college, it was an old 3 story house and we had common bathrooms. They had an awesome play room down stairs, Jeremy found a big bouncy ball and he was in heaven. He was allowed to take it to our room. He was restless after the drive but he did fine. We hit a wintery mix on the way home so that made the trip a little longer, but he is on his own turf tonight.
The appointment went well. They did several X-rays of Jeremy, one in traction where one X-ray tech held his arms and I held his legs and we stretched him, that allows the Dr. to see how flexible his spine is and when it's released which way it will go. They had 3 awesome X-ray techs, who interacted with Jeremy and he responded well especially to Ben. Ben became Jeremy's friend and Ben really took to Jeremy. I love seeing the residents, they are funny. The resident comes in first and the look on his face when he goes over Jeremy's history but nothing like the deer in the headlight look when you tell them he has FG syndrome. They don't want to act like you just blew their mind, so he says, "Well what does FG stand for". My reply, "F G" and then the explanation. Then Ben came back to get us because one X-ray was blurry, he carried Jeremy down there. Then the final moment to actually meet Dr. Daniel Hoeresncmeyer, just so you know for future it's Dr. Dan. I felt like I already knew him, we had emailed, I had researched all I could about him. He explained what he was looking at with Jeremy's spine. I was totally treated like a mom who was a person, but not only that he was totally patient with Jeremy and Jeremy responded to that. Jeremy was a person, not a complex spinal case. Jeremy's spine is fairly flexible. We are looking at surgery in May, hopefully toward the end or first of June so Jeremy will finish the school year and have the summer to recovery and adjust to his spinal difference. The first plan is growing rods, there is commitment meaning he will need to have then lengthen possibly every 6 months. To do the lengthening is not as intense as the surgery and what we are doing is guiding Jeremy's spine as it grows. Jeremy will then continue to wear a TSLO brace like he's worn since he was 2 years old. The rotation inward is Kyopsis and I'm sure the spelling is wrong and that might pose a big problem for us. Dr. Dan said that could require 2 initial surgeries, which Dr. Anagnost told me that could happen. He said they could go in from the chest cavity and release that inward rotation, go to recovery possibly in traction and then go back to do the growing rods. We have to get a CT scan, C, T, L-spine with 3D reconstruction. This will show Dr. Dan if J's spine can handle the hardware required to do the growing rods. He asked about doing that today while we were there and I told him normally we have to sedate Jeremy for these type of procedures and if he was going to require a new echo our Pediatrician is awesome to work on getting numerous procedures at one time. He said good enough he would wok with us in any way we needed. We could get him the films. I'm going to send Dr. Cyrus an email tomorrow to get this process started. I assume St. Francis can do 3D. That is our first task to accomplish because if his spine can't handle the hardware that will change his mind on growing rods. He did another X-ray before we left that will show how flexible the inward rotation is, but he told us we didn't have to wait around. Once we get him the CT films, he looks at the other X-ray and talks to his partners to make sure he is thinking in the right direction we will then look to schedule the surgery. We will go back before surgery to do a pre-op, which will be the normal, Jeremy's physical & history, chest X-ray and blood work. I did ask him if he would wait until Jeremy is 18 to do the spinal fusion and he said he wouldn't wait that long, probably 3-4 years. Depending on what has to be done, Jeremy could be in the hospital 3-4 days with growing rods, if the kyopsis is complex it could be longer depending on what he has to do.
It's going to be a tough surgery on Jeremy regardless of what has to be done but again this isn't an elective procedure. I have an unexplained total peace about the whole situation. I know GOD lead me to the physician he had picked out. When we first started looking Columbia, MO wasn't even on my radar. In my mind I was thinking Dallas Children's, Dallas Scottish Rite and St. Louis. I always prayed since that day in Dr. Anagnost office he said, we've got to address this no longer wait and see that GOD would heal his spine. GOD started over a period of time change my prayer and I started to pray GOD send me to the Physician you have picked out. I know today I found that person, and Dr. Dan is who we need to follow with.
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