Our day began at 6:30am with a long drive to UNC for multiple appointments. 1-Neuropsychological Evaluation with Dr. Hannah Allen. This took two hours. (Results will be discussed next week.) Rayden enjoyed riding the shuttle from the ACC building to UNC Children's Hospital. He had 2-X-ray shunt series, and 3-Rapid sequence MRI. Rayden didn't even need Momma during any of these exams. He knew exactly what to do and wasn't scared at all. He is growing up so fast. We also went upstairs to the 7th floor to visit his nurses and get the Beads of Courage he has earned from 4-Child Life. We rode the shuttle back to the ACC building for 5-Neurosurgery post-op appointment. Dr. Elton said his shunt looks great. He went over Rayden's symptoms and explained how lucky we were to be that close to a Children't Hospital with a Neurosurgeon. He even spoke about how children with Spina Bifida have always scared him with shunt failure. The headache and vomiting is one thing, but SB kids have brain stem issues that can quickly become critical. He said the CSF can build up so fast that it puts pressure on the brain stem and they stop breathing, which is what Rayden was doing. This can also happen to people without SB, but it is so far down the symptom line that you are already getting treatment before this happens. The time-line is accelerated in SB kids. He said we were one step away from fatality! He told me that Rayden's shunt failure will progress the same way each time, so we do not need to wait if he begins showing any symptoms. He has to go back for follow-up in two months. Rayden was exhausted and slept the majority of the way home. We arrived home around 7:00pm.
They were able to download the MRI scans from Orlando to Rayden's chart. These comparison photos are before surgery in Orlando (2-14-23) and after surgery in NC (3-9-23).
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