Jack is 4.5 years old and has a rare syndrome. His brother Kaden(8), sister Jeweliana (9) and myself all have Ehlers Danlos Syndrome. Jack has many diagnosis and is overcoming them all. He has had many many surgeries. We have received a lot of horrible medical care and he has had a lot of bad things happen to him because of pure medical neglect and ignorance. We communicate clearly never leave his bedside and explain things in simple ways to the care providers. But they continue to disappoint and provide poor care. You would not believe all that he has gone through because of neglectful doctors. Which we dont understand because we advocate so much for him and want only the best care we can get for him. We try so hard to get him the best we can but no matter where we take him we find they all are not able to do that for him. What we are doing now is fixing his neck that he broke a year ago in September 2013 after he fell down stairs hitting his head 5 times. No one not a single doctor checked to see if his neck was broken. He has been suffering with a broken neck and spinal cord damage. He also just had tethered cord release. I knew he needed a fusion because when I put him in a cervical collar his symptoms got better. I sent his scans and records to 15 neurosurgeons across the country who had decent experience with pediatric fusions and none of them wanted to take him as a patient. One doctor did. I begged him to fuse his neck. But he didnt know what was wrong. He did a distraction expansion which enlarged his skull to make more room for his brain. We turned screws in is skull for 6 weeks and then after 4 months they removed the expansion device. He has holes in his skull now from it and he did his 3rd brain decompression for chiari malformation which is when the brain herniates into the spine. That was in December. He started getting the worst headaches we have seen him have in late June. We took him to Duke and the neurosurgeon again refused to help since we had gone out of state for care. (Because he had missed his broken neck we had no choice but to look elsewhere.) I again sought more surgeons with experience with complicated kids like Jack Jack. We decided on three teams and then we would go from there. Each team has their own idea of what needs to be done. All agreed finding out why he needed the collar was the most important thing. We were relieved and grateful. Finally something was going to be done. We saw a huge team of doctors at NYU last week and the first thing they did was a neck x-ray and they found his neck was broken. His odontoid is broken and the C1/C2 fractured. We decided Dr. Rekate in NY would be the best person to fuse Jack because of his great experience with fusions on children with connective tissue disorders. We went home to N.C. But we had to come right back because the flexing and extending of his neck caused him to get even more severe symptoms. It was now emergent and he had to get in. There were no signals from his brain to his limbs. Now he has signals and his limbs area already feeling strong. Sadly Jack has a very small jaw and is normally difficult to intubate. But the way the fusion was done so that he will have signals to his body and not be paralyzed or die has positioned his already too small jaw further back. They will have an even harder time intubating him now. The doctors are recommending he have a jaw expansion which is the same thing he had done to his skull to make room for his brain. It is a very painful surgery and he will have to have rods sticking out of his face during the expansion. We are not sure when we have to do it. But we can tell as the swelling is going down that his neck is now in a position to cause obstruction of his airway. We are not through this challenge yet and we know more surgeries lay ahead. We love to share Jack Jack with everyone. He is a very strong boy who keeps on smiling through it all. We believe in him and are honored to be his family. We love reading everyones words of encouragement and support. Seeing everyone love and celebrate his life andspirit. Thank you all. #TeamJackJack
Posted on: Sun, 12 Oct 2014 12:04:49 +0000
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