Day 30- I fought Bellevue and I won

Some may know the battle I've had with Bellevue. From a lack of communication with clinic neurologists, to record release issues from moving. How difficult it is to reach anyone who speaks English. 

In March, with a new neurologist, I needed his MRI images. Bellevue ignored the request. Then on April 19th, a new MRI was taken showing no signs of brain damage. A more aggressive approach was taken by attending neurologists at Albany medical center for the previous MRI images. Then my neurologist finally received a disc. It had chest x-rays. 

We still have no MRI brain images. I'm going to NYC tomorrow, and thought I could just pick them up. I called Bellevue this morning to ensure it went smoothly. I was told after I signed the form it would take 10 days for the disc to be mailed. My son's rare form of epilepsy depending on those scans was not enough. 

I was ready to storm the castle. I took out my proverbial sword, and searched. I scanned through NYC public hospitals, and found the patients rights form. Andy's rights had clearly been violated. #15 to be exact. There was a number for the department of patient advocacy, for questions or concerns and to submit a formal complaint. And access to the state health department to take it further. 

I called the number and explained with examples why his rights were being violated despite their protocol. How exceptions are valid and a necessity for him to receive critical care. Like magic, she told me she needed to make a phone call for me and would call back. Less than 10 minutes later I'm informed to bring proof he is my son (birth certificate) and my ID and the disc will be ready for pick up on Friday. 

Never accept an answer that does not work for you. Every contract can be broken. 

My perfect baby boy

 This is the hardest story to tell, but I know it like the back of my hand. 
After having two friends ask me today what Andy's medical issues are, I felt it was time to write it out.

Andy was born limp, due to being deprived of oxygen during a prolonged labor. Within 2 hour of birth he had a seizure and was transferred to Bellevue because they could do a cold cap. Andy did not qualify for the cold cap procedure. An MRI scan showed mild to moderate damage to his posterior internal capsule, which is a portion of the brain that runs through the basil ganglia. The EEG scan confirmed the seizure, but with where the activity was located it did not correlate with the brain damage. They do not know the cause of the seizures. The next day he had another seizure, and they began the narcotic Phenobarbital. They then did a 3 day video EEG where he was attached to the EEG for 72 hours. While on the medication there was no activity. A week later when the medicine wore off, they did an EEG and saw seizure activity in the brain that had not had the time to manifest into a physical seizure. He was placed back on the medication but in a lower therapeutic range. The initial dosage had him asleep for the first 10 days of his life. He was in the NICU a total of 16 days. The last 6 days had been due to him being too tired to wake for feedings from the medication and needed a feeding tube.

 He is still perfect, and he has just started mimicking the sounds that I make.