April 12, 2018 "SB Clinic and Neuro exam"

Most of Rayden's appointments went great today. There were really only two concerns (below). Dr. Alexander says Rayden seems to be right on target with his developmental milestones. He weighs 33lb. without his cables (60th percentile) and he is 3'3" high (79th percentile). His BMI is in the 25th percentile, which is exactly where Dr. Alexander wants him to be. 

Neurosurgeon

Dr. Elton was troubled by the optic nerve swelling. He says Rayden just doesn’t look/act like a child with shunt malfunction. He says the only way you can get brain pressure if you're not draining fluid but he doesn't see any evidence of this on his MRI. He's thinking there may be debri in his shunt but maybe not enough that is causing it to totally shut down. He could tap the shunt but he doesn't want to expose him to any unnecessary infection. He decided to adjust the shunt valve anyway to drain more CSF off his brain hoping to alleviate any pressure. He scheduled a second MRI for next week. He says the previous one from January showed no tumor or brain bleed. We will have more nerve photos taken May 3. If they are still swollen then he says he will be obligated to operate on the shunt. He will take it apart in the OR to see if it is clogging or whatever. If the optic nerves remain this chronically swollen long it may cause permanent vision problems. Rayden already has residual scarring on his optic nerves but that is probably from his previous hydrocephalus issues. He doesn't need any more damage to his optic nerves. 

Renal Ultrasound/Urologist

We have realized that Rayden has associated gloves with pain. He asked the technician to take off her gloves to do the ultrasound. When she did, amazingly Rayden just laid there and allowed her to take fabulous pictures of his kidneys and bladder. Dr. Ross says his bladder and blood work looks good. She mentioned his kidneys have not grown much since his last ultrasound. She is alarmed but not worried yet.

After six, long appointments today, Rayden is worn out! He is such a trooper to get pulled every direction and he takes it so well.