Day 6

We get to the hospital at 9:30am, and Andy is asleep. When he wakes up, he has multiple seizures or "spasms" as they are called. The nurses are confused when we tell her he is having a lot, mislabeled them as a cluster and paged the doctor.

Dr. Pugh comes in and the mistake is explained to him. We discuss how Andy is not improving with the increase in medication, he tells us it can take 5 days to see results and we will begin to see them tomorrow. He also informs the pediatric resident that his blood tests he ordered yesterday are not in the system.

Andy has his blood drawn, and the nurse tells me to put a maxi pad in his diaper. He will never hear the end of this. It was for the urinalysis. The day was filled with spasms, and a sad silence as we knew daddy had to go home.

After daddy left, Andy napped for a whole. Woke up, and I fed him. Laid him down and went back to the house. Dinner was not ready at the usual time and I was gone for almost two hours. I return to Andy's screams. The nurse tells me she tried everything. I hold him, and he goes silent. He gave me feeding cues, so I fed him again.

Not very long after he is acting sleepy, but hungry. It is around 7pm. I know that if I feed him more he will sleep through the night without medicine. They will not give his medicine until 9pm. Andy wakes at 7:40 from not being full, and spasms over and over until 8:15 when I insist he is given his medications.

This is a discussion I will be having with the doctor tomorrow. I'm getting up at 6am to make it there before 7am. I will be there for my boy, every minute.