Wednesday morning Addison was admitted to CNMC for a 24 hour EEG to evaluate his seizures and make a new plan. His seizures presented like Infantile Spasms. We went in armed and ready to fight for ACTH after two failed rounds of prednisone. After he was connected to the EEG we had an opportunity to speak with one of the neurologists we work with. She agreed with our position to push for ACTH. For the first time in a week, I had confidence in our decision. I felt at peace.
It was a beautiful evening in our nation's capital. As I was walking I couldn't stop the tears from coming. Even the runners passing me on the sidewalk made me sad as I thought of all the running I haven't done in the last 2 months. Stupid? Yeah. But I think sometimes when you suck it up for so long it just has to eventually come out. You know? I found, what I thought, was a quiet place where I could pray and cry and just generally get myself together.
As it turns out, I sat down next to the medevac pad. Which is not actually quiet. But it was exactly where God wanted me at that moment. I wasn't there a minute until a helicopter landed and I watched a child being moved indoors.
A few minutes later another helicopter came over head. I was reminded of another mom who recently shared with me the story of her 3 year old son. Earlier this year he had a severe asthma attack. She took him to the small hospital near their home. Doctors in the ER quickly realized he needed to get to Children's hospital where he could receive specialized care. They prepared to take him by ambulance for the 90 minute ride. Just as the ambulance was getting ready to leave storms related to a hurricane took out the traffic lights in DC. The medical team knew this could delay his arrival by many hours and decided to call the medevac. The mom had left her older child at home and realized her cell phone was dead. She asked if she had time to make the 5 minute drive home and to tell her daughter what was happening. They told her she had to be back before the helicopter arrived or they had to go without her. She shared with me how she watched the sky the whole way watching for the big yellow bird knowing it would be the journey to save her son's life. She ended her story by recounting how her son coded three times en route.
Remembering these two stories made me just cry more. Cry that I am so ungrateful. Cry for the pain these two families experienced. Cry out of the simple gratefulness that no matter how stinky Addison's situation is, his seizures will not likely take him from us.
It's all about perspective, folks.
Addison came through this EEG much better than the last 24 hour. I think this was, in large part, due to the answered prayer that he didn't need to have an IV. When he was hospitalized in July, the hospital required an IV. He has very weak veins which kept collapsing. In the end the only vein they could get was in the hand of the thumb he likes to suck. Another big help, was after 5 EEG's in 8 weeks, he's gotten used to having wires attached to his little noggin.
We knew his EEG was not as bad as when he was in the hospital in July. Mostly, because everyone left us alone. And no one was running around crazy or taking pictures of the screen. But we still spent 24 hours watching the screen, praying, and wishing we had majored in Neurology instead of Engineering and Midwifery so we could just have answers.
Again, I am very grateful for Addison's neurology team. Unless, it is an emergency situation, it usually takes several days to get the results back on an EEG of this duration. However, we didn't want to leave town until we had the report, in case we needed to start treatment or get working on insurance approvals. Everyone worked together to get the results expedited to us in just 6 hours.
The seizures he is having are caused by another form of epilepsy known as Myoclonic epilepsy. This is a less severe form of epilepsy in that it is not associated with the developmental delays of infantile seizures. The anticonvulsive medications used to treat it also tend to be less destructive than those used to treat Infantile Spasms.
These seizures began after weaning from the prednisone and initially were very frequent. The last 3 days they have become much less frequent. Because of that, Addison's neurologist has agreed to let us use the time we are away on vacation to pray about which medication to use. He is suggesting Topamax or Keppra.
However, we are going to take it one step further. I will personally be praying the seizures go away in the next three weeks.
Addison's physical therapist said that would be an awesome miracle. I can't deny that. But as I told her, I am grateful the God of awesome miracles happens to be my daddy. And by association, Addison's granddaddy.
"Thou art the God that doest wonders: thou hast declared thy strength among the people." Psalm 77:14