I was so tired I completely forgot about his OT coming by. I heard a knock at the door, grabbed my bathrobe, then was confused by seeing her at the door. She was right on time and I was befuddled. Thankfully Andy was ready, and she was so understanding. He did very well, and she can see improvement since Monday.
We walked to the library, Andy slept the whole way there. The stories were barely over and I could tell something was wrong. He then had a cluster of over 50 spasms in 10 minutes, until they slowly drifted further apart then stopped.
I called the neurologist because if that happened in the hospital he would have had emergency seizure medication. I was told that medicine could be only delivered through an IV. With us going on 3 weeks of spasms, and them not being gone, we must take drastic action. Any more time and we could lose Andy having any hope of a normal IQ. So we must start the ACTH injections. The paperwork is being started with the insurance company, and I will be trained on Wednesday at his doctors appointment. All questions will be answered then as well.
This is the website for the medication if you want more info: http://www.acthar.com/ispatient/home
It's heart breaking in every way possible. Our lives are about to become extremely limited, Andy will have a very compromised immune system. This medication has to stay refrigerated and I will be the only person trained to give it to him because Daddy can't take the time off off of work to learn about the injection. He can help me, I will definitely need his help restraining Andy every time, but that's it.
I'm cringing at our trip to NYC, but that's not optional. Legal obligations and whatnot. But it will now be limited. And then we will be staying in Utica until this is over.
I can't type anymore. I'm too raw and emotionally empty.
No comments:
Post a Comment