It almost feels like a dream or something. Something that I can't quite describe.
Jonathan says...it's easier for your heart to die the second time around.
I just feel numb. Detached even. In the moment anyway. Earlier at Dr. Pedi's office I cried. So did she. I guess it must be hard on the heart to watch a mommy trying to come to terms with life. With unexpected sadness. Honestly...after 8 months...we were really starting to believe this might be behind us. The IS anyway. We always knew we'd probably be dealing with other seizures...given Trevy's consistently abnormal EEGs. We just didn't expect this. My heart certainly wasn't prepared. And I was hoping to God that I was just a loon. I'd much rather be a loon.
Trevor's spasms are still mild. Although more frequent. He's having clusters of as many as 35 back to back seizures. I know this might sound crazy...but he knows. He knows when he's about to have a cluster. I know he knows...because he always comes to me...climbs in my lap & stares at me. With those big soul-eyes. While I watch him disappear 35 times in a row. And I can't look away. I desperately want to look away...but he's my baby. And he needs me.
I wish I could say it's an easier decision to use ACTH for a second round. Especially after it worked so well the first time. But it is not. I hate the drug. Passionately. I hate that the same medication that can potentially heal my son...will also cause him harm. I hate that we have to administer it. That we have to draw it up. Sanitize his beautiful baby skin thigh. Swaddle & pin him down. And finally...after a deep breath & tears are streaming...inject the needle into our own son & push the thick gel in. With every fiber of my being I hate that Questcor will make another $150,000 (or more) from my family. And as much as I'd like to go another route just to make a point...I will not use my son as a lab rat. We have counseled with some of the best neuro-minds in the country...and they have all pointed us to ACTH.
I'm waiting for the call. From Dr. Neuro. She's working out his treatment plan...and lining everything up for us. Trevy will be using Zonegran in tandem with the ACTH. Our hope is that we can start this at home. We hate the hospital. But if she has to admit us...she will. Of course...the hospital does not keep ACTH stocked. They can't afford to.
On the other hand...can you believe we have been offered at least 6 vials of ACTH! From families who have unopened vials...and want to donate them to Trevor. Leaves me speechless. Overwhelmed with emotion. The only words I can find are...thank you. Thank you...to each of you that offered Trevor hope.
Comments
I hope it works permanently this time!
Erin
Danielle- I completely, 100% agree with Erin. Take the meds, sign a waiver releasing others from the responsibility of accepting their med and allow Trev to have the additional space on his lifetime cap for his life insurance.
hug that cutie for me.
Jen
P.S. Austin always knew too. Remember, he was even older than Trev is now when his IS hit and he always knew. And tell J that it never gets easier, no matter the seizure type. I wish I could say it did, but every new type that appeared ripped my heart a little more. Only now is it beginning to mend.
and i agree, signing a waiver & using those will b enough to screw questor out of the many more thousands of dollars they would have made off u!
i can't stop thinking about u danielle...i cried telling my husband the sad news last week & i find myself thinking of u & praying for ur family as i'm in the shower, washing the dishes, working on cakes, laying in bed, etc....i soooo wish i could b there for u personally & that there was something i could do to help u out while u're going through this. i won't stop praying for u!
hang in there - u're are so my hero! xoxox,
sharon