Tuesday, May 19, 2009

One year ago...

One year ago today, we were scrambling to gather clothes for a 2 1/2 hour drive to our closest children's hospital.

I had spent the morning in tears and panic trying to describe the downward spiral of events to our local pedi's nurse over the phone.

It was a Monday morning. The previous Friday morning, we were in the pedi's office trying to describe what I instinctively knew were seizures. I knew I seemed crazy because Austin was perfectly fine while we were there. I was instructed to "monitor" him over the weekend and an EEG was to be scheduled for the following week.

Friday night, I think he probably had two or three clusters. Saturday, we all watched his every move. He had several clusters that day, but none containing more than about 12-15 spasms. Sunday, I saw nothing. I thought whatever had happened was over.

That Monday morning, life went on as usual. My baby was okay. As I prepared him a bottle in the kitchen, I glanced over and saw him dropping his head in his jumper. This was the first time I saw him have spasms in a vertical position.

I immediately called the pediatrician. I couldn't just wait and watch anymore. It was sheer panic. It just kept happening. One right after another.

We exchanged several phone calls back and forth. I was soooo freaked that I remember asking them if I needed to call 911.

Instead of me bringing him back in for another evaluation, the pedi instructed us to take him to the ER at Texas Children's Hospital.

I called Chad and my mom...we would all go together. Once they arrived, we started packing. Less than one month before, we'd already had an ER visit that resulted in an admission. Chad had spontaneously collapsed his lung. So, this time, I knew we should probably take extras...just in case. And, my gut was telling me we wouldn't be back that night.

And, we weren't. We didn't come home until Friday evening. That week my life changed. Fears I never knew existed were a reality and a part of my everyday life.

It's crazy that so much has changed since then yet nothing has changed. We still see seizures every single day. Every single day. Every hour even. Not one day since then has he had a seizure free day. Not one.

Ironically, he's regressed and progressed.

Nothing makes much sense, does it?

Anyway, we found ourselves back at Texas Children's almost to the day. Yesterday, we made that 2 1/2 drive again. For the lumbar puncture.

It was eerie being back there almost exactly one year later. We've been countless times since then, but yesterday was different. I caught myself glancing over in the ER remembering in detail our 5 hour wait to be seen. Remembering having my video camera ready for everyone to witness the episodes that caused all the panic. Because without that, I doubted anyone would believe me. After all, he was in every other way, perfectly normal.

I even remembered one of the nurses saying (after we were admitted), "Does he have Infantile Spasms?"

Chad and I both said in sync, "No. The doctors said they were seizures."

She gave us a strange look. I didn't think anything of it at the time. Maybe that will give you and idea of just how clueless we were. Just how much (or little) we were informed while we were there. Just how deceiving the words Infantile Spasms are. We even left with that notion. We left not even knowing that Infantile Spasms were a form of epilepsy.

Back to that nurse...

She said that a lot of kids come in with the same thing, and "you can just tell they're not right..." -meaning developmentally, neurologically, etc.

Then she said, "...but, he is ALL right!"

That still haunts me today. At the time, it made me feel good...like maybe he's not going to be affected because it should have happened already. But now, you can tell it's affecting him and it affects me every time we go somewhere. I wonder if people notice that he's not right. It's a horrible thing to even care about, and I shouldn't. But, I'll never get her voice out of my head.

Yeah, that's been a struggle. But not at all the biggest struggle. That's the seizures. We're completely off Banzel now. The epi wants us to try Clonopin now. I was supposed to have it in my hands last Friday...but somehow the lines are crossed between the epi clinic and pharmacy. It's Tuesday and we still don't have it.

I have to admit, I was surprised by this choice. He never mentioned it during our last visit as a potential "next drug". He gave me a list of seven different meds that target Austin's specific type of seizures...this was not one of them. I'm not crazy about putting him on another drug that will possibly sedate him. He's just now starting to come around since the Banzel. I hated that mess!! But, unfortunately, there are few (if any) that do not come with a long list of nasty side effects. Sleepiness being one of the most common. But if it can stop the seizures...it's worth my consideration. If we can ever get our hands on it, we will see!!

With the lumbar puncture results pending...and the initial review of the amino acid and urine organic acid tests normal (it's not official until the epi's review)...we are just waiting. Waiting on meds, waiting on results, waiting for the next EEG (in July), and waiting for our next step...Hoping and praying for our miracle!

4 comments:

baby trevor's mommy said...

In many ways...I remember those days of Trev's diagnosis to treatment...in more detail than I do anything else in my life. More so than my wedding. The kids births. Toby losing his first tooth.

I remember frantically calling the pedi ALL day...and finally saying I'm taking him to the ER before I got a call back.

I remember the (stupid) EEG tech telling me that Trevor was going to fine...and in college someday like her daughter. Even as the head of neurology said we needed to see him immediately after the EEG. I wonder what she thinks when she sees us now? I still think potty words when I see her...

I remember the pit in my stomach as we were giving him that first ACTH injection.

It's all clear as day.

I think it's normal & healthy for us to mourn that our children are "not right"... We have to be able to grieve that. And I'm SO darn sick of hearing people say they go through the same thing with their healthy children...could lose their healthy children at any moment...blah blah blah....grrrrrrrrrrr! I have two "healthy" children...and it IS NOT the same! I suppose it helps me to release the sadness. At least I can feel...and am not numb.

I don't know...you know I suck at advice. I'm much better at being all gloomy & sad. *smile*

I do know...that just like those first few months were crushing. We grew through it. Our hearts get stronger without us even knowing it.

(((((((hugs)))))))))

...danielle

Jamie said...

Ok Girlfriend you are going nuts..breathe....breathe..I very much remember going into the neuro with madies for her first of many EEGs with the feeling of "yeah, seizures? no way!" and with the infantile spasm diagnosis that we received I was in shock..talk about numb...I can tell the story a million times how a week later we were pumping her with ACTH and how we thought that was the miracle cure...then Spasms returned I just broke down...
I just try to remeber as well that EEG that told us the spasms were gone and when we finally found a good med that gave her the most fredom from her seizures that we had ever seen in a YEAR...
Gosh all this can bring me to tears...Its insane how our kids have to be on SOooo many drugs...I hate it hate it! Madie is still really delayed...and i look at Austin and say he is doing so many good things...standing, feeding himself...all things that madie has to work on...that I fear each day I will never see her do!!
keep your chin up...HANG in there! take a spa break...take a wine break....(my favorite) Our kids can handle more than you think!!
Clonopin?? Well Madie is a better gal off that stuff...BUT its been known to work so I am not here to discourage you from it by no means!
((((( HUGS)))))
OH madie is on Her Valproric Acid-Depakote and Zonegran. :)

JSmith5780 said...

We all know that lost hopeless feeling. All is can say 5.5 years later is it does get easier.

I hope Clonopin helps Austin.

Holli said...

Danielle -It's strange isn't it? I can almost remember that week in it's entirety...but I can't remember what I wore yesterday! Times like these, I'm swollowed up by all those memories, but like you said, I'm growing through it. We're trucking on...a few (emotional) setbacks along the way, but still going forward!

Jamie -I'm okay! I really am! It's just been a crazy week...lots and lots going through my head. I'm grateful everyday for Austin's progress, but just like you, scared of things I may never see. Fearful, but still hopeful!

Jen -I've still got a lot of hope. I guess it doesn't always show though. I'm getting all of this out of my system!! It's been building up for a while. I'll blow it off and keep on going! Btw, I like the ABC logo!