My blog app on my phone isn't working right now, which means I can't blog if I don't have access to a desktop computer. I shared this on Facebook and wanted to make sure any blog readers that aren't Facebook Friends with me know what was up!
We went to New York Presbyterian on Friday to meet with Dr. Lenke, who is a world famous spinal surgeon. Many professionals say he is the best in the world. We felt like we did the first time we met Dr. Campbell-like we were in the presence of greatness. Dr. Lenke is very similar to Dr. Campbell in his assuredness and knowledge.
Dr. Lenke said nothing good will come out of the wait and see approach because we know what will continue to happen. Her lungs will continue to decline until we lose our window. He emphatically said that the rib to rib VEPTR is not the right choice for her at this point because her kyphosis is the biggest issue. He said her health is not stable enough to put veptrs in and she would almost definitely need a Trach. The best choice is to straighten the spine as much as possible through halo traction, give her lungs a chance to open up and allow her to breathe easier, and then fuse. He thinks from the images that she won’t grow much more anyway. But getting her straight in traction will give her several inches and her legs will still grow.
Halo traction means being in the hospital for probably 2 months before fusing, then going to rehab. He may do additional work to the spine during fusion, depending on the correction he gets from the halo. All in all, we are looking at about 9 weeks in NYC and then maybe another month in rehab.
He said this was really the best and only successful course of action. I appreciated the definitive answer. We will have consults with infectious disease, ENT, anesthesia, and pulmonary here in NYC to establish a good inpatient team. I told him I am a planner and I don’t like surprises, so I want to make sure everyone is on the same page. He agreed that he doesn’t like surprises either. We need to get an mri, ct, and xrays but those can be done at Hopkins. The halo surgery will happen in May and then the fusion will be in July. We already have dates, which is crazy. We will most likely be in New York through August.
So.....we appreciate you praying us through these next few months. Our job now is to keep Abby healthy, keep her weight up, and get her body as strong as possible.
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