Day 7

I woke up at 5:30, and made it to the hospital by 6. I'm informed that Andy had a seizure, different than the spasm seizures, and he was given medication for it.
The video shows him sticking out his tongue and making feeding cues in his sleep. I'm told that he was also making a bicycle movement with his left leg, and arm motions.
Two hours later a resident comes in and tells me after watching the video that it was not a seizure. And an EEG would not show evidence of the seizure that has already occurred.
At 11am an anesthesiologist comes in with consent forms for the spinal tap. I find out it will be a "senior resident" doing the procedure. I felt fear in my heart, but I'm not the type to punish a person for someone else's actions. Then I find out Andy weighs 17lbs. He's gained 8oz since Friday.

After the tap I find out they had to try 3 times and there was blood in the sample. If another is needed, Dr. Pugh (his neurologist) will do it himself.

Dr. Pugh confirms that the video proves Andy did not have a seizure. He admits and owns up to his mistake. He was described something different than the video. He had brought 3 residents with him, and requested that I play the other videos for him. I proudly showed every video with seizure activity. I believe that if one of those residents can recognize and help even one baby having infantile spasms, it was worth my time.

We won't find out any tests results for a while, and the echocardiogram was norm. On Wednesday I can take Andy for more blood work and genetic testing. Being sleepy from the emergency medication means he needs to stay in the hospital but can go home in the morning as long as he is eating properly. He keeps waking to feed but sleeps the rest of the day away. Now he is napping in my arms, and is dreaming of seeing daddy tomorrow night.

The Ronald McDonald house has been extremely generous and informed me I can stay there with Andy, so we are in no rush waiting for Daddy to get out of work.

He is still having spasms today when awake;however, Dr. Pugh says that as of right now he does not believe Andy will need injections and we should see results with the current medications.

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.