The Disease

The 2nd day of IVIG Jason Called me mommy
The 3rd day of IVIG he mumbled, "Alright, Ok, Yes" repeatedly
HE started grinding his teeth and the team was working on getting him botox to stop.


The 4th day he said incoherent things and began to look around
Again I bothered the team about his teeth.


I stayed everyday - all day because he was unpredictable. His restraints were optional, but becoming more regular. I cried every time he was restrained. Watching them taking Velcro straps and tie them around your child's wrist. The tremble prevented me. My hands shake too much to ensure there is a click.


This day - was one of many days that were promising to be better and gave me hope. I had eaten today. I still had not slept but the sleep was creeping up on me. I was there so I removed the restraints. The nurse persuaded me to take a nap. I gathered my two hard chairs together - grabbed a sheet and went to sleep. I was beside his bed and she was watching him.


I woke up to chaos. Jason had fallen off the bed and was now on the floor. The nurses came in scrambling and screaming- blaming me for removing his restraints although there was no order for him to have them so legally they should not have been on in the first place.
I felt like a small child. Afraid to touch him. Letting them yell at me while I cried softly taking my verbal lashings.
They were right. I fucked up. I suck as a fucking mother. I FELL ASLEEP after DAYS of being AWAKE while my son somehow fell out of his bed.


I cried hard and I begged God to forgive me. I begged him to make sure he had no internal bleeding and that he was ok. The tests came back fine. Nothing broken, nothing affected. Just my mental state. That broke a little that night. I don't sleep more than an hour at a time now. I am afraid.


The 5th day the Violent storming started.


There are two things with this disease. There is the storming and the agitation.
Agitation is the lesser of the evils. He is uncomfortable, usually needs to be cleaned, moved around or he doesn't want a lot of people around. His heart rate accelerates, he sweats profusely, his breathing increases. Basically he prepares to become THE HULK.


Once the agitation is down he calms down and its over.


Then there is storming.
That is like Hurricane Sandy going on inside of his body. There is no release from this unless he is heavily sedated. Its the worst thing to see in the world and I stand helpless as he pants, grunts and his heart races to sometimes 189 bpm.