I finally got the call yesterday around 530pm. Our 19 month olds MRI came back and we were told his chiari was really tight, and there is fluid build up. The Dr wants to operate. I’m terrified but also relieved. This is the same Dr that did my husband’s surgery 24 years ago. I keep telling myself that he’s at the best place he can be at, Duke is an amazing hospital and his Dr is over qualified. But he’s so little, and I worry about him. I’m so mad at these doctors here in my hometown. Everyone I seen for this condition told me I was crazy, literally, and that there was nothing wrong with him. I was told by his neurologist it was mild, that I shouldn’t push this because it’s hard on him, that he had no symptoms, that nothing will be done, and he dropped him as a patient. If course, his tune has changed since Duke got involved and his neurosurgeon told him he needed to continue to monitor his meds. The pulmonary Dr told me that sleep studies were too hard for children, that he seen his scans and they weren’t that bad, and I shouldn’t be asking for a sleep study. I told him 3 times within 5 minutes, he was a breathing Dr, not a neurosurgeon, his neurosurgeon said do it, so do it. Then that never called with the results, I had to call them.
I’m so glad I fought for my son, that I was his voice. Even when family told me I was wrong, I knew that he needed me to speak up for him. We find out the 26th when the surgery will happen. I seen hospital recovery can be anywhere from 1-5 days with 4-6 weeks at home. I’m just praying the actual surgery doesn’t last too long and that our little one on the way stays put for a while. She’s due August 23!