Friday, May 29, 2009

Are You Freaking Kidding Me?

So, here's kind of an odd story.

As you all read in the previous post, our fourth EEG was last Friday, May 22nd. As of that Friday, we'd been seizure free for just over a week. We were super optimistic. We thought we'd made progress. Then our neurologist didn't call on Tuesday with the results so I called the clinic and got in touch with Dr. Murphy on Wednesday. Dr. Murphy punched me in the gut with the "no improvement, still having seizures" opinion of that EEG.

So when Dr. LePichon called me around 7:30 this evening, I was expecting the same story.

He started off the conversation by apologizing for not calling Tuesday and for just now getting back with us. Apparently he came down with the flu and the hospital suspected that it might be H1N1 (Swine Flu), so they wouldn't let him in the building. Not until the tests came back negative did they let him back in - which was just today.

Anyhow, he told me that he'd reviewed her most recent EEG and that there were no signs of hypsarrhythmia. I was totally expecting no signs of improvement.

Holy crap.

For those of you that don't know, hypsarrhythmia was basically the root of the problem. It is very chaotic brain activity. Apparently it means "chaos" in Latin. Or at least I think it is Latin. Hypsarrhythmia is what shows up on the EEG that leads to the infantile spasms diagnosis.

And there was none.

I was pretty much in shock. I told him that his story differed greatly from what Dr. Murphy relayed to me on Wednesday. He decided that Dr. Murphy hadn't been looking at the most up to date EEG results. Hence the, "Are You Freaking Kidding Me" post title.

I was jumping up and down while still on the phone. Jody started crying. It was unbelievable.

I was adament that Dr. Le Pichon punch Dr. Murphy in the gut the next time he saw him. Then yell at him. Maybe that wouldn't be very "doctorly" of him, but 1) we were so bummed the last couple days because of that news and 2) maybe someone should check the dates.

He continued on that there were a couple of spikes in her frontal lobe, but nothing too wild. He said that it was just about a normal EEG. Unbelievable.

So we're still not completely out of the woods. We can still wind up with something called Lennox-Gastaut . Scary stuff indeed. But we're not going to worry about that until something tells us we need to. Now, that something, unfortunately, would be seizures. Double unfortunately, we don't really know what to expect (nor does the neurologist) so we will stay on constant lookout for anything out of the ordinary for the next few years. Yeah, it could be next week, or it could be in three years. Scary stuff.

Back to the good news, we're going to start weaning Kylie off the ACTH. We're at about .625 mL per day right now, and we'll bump her down to .5 mL for the next five days, then down to .375 mL for the five days following that, then .25 and .125 mL for each of the next five days following that. A total of 20 more days on ACTH. Then, hopefully a few weeks after that we can begin getting out in public again and interacting with the world! Yippee!

Dr. Le Pichon cancelled our next EEG, which was scheduled for this coming Monday, June 1. The funny thing about that EEG is that it was supposed to be our first one! It was originally set up when we first went to our pediatrician's office with this issue on 4/16. So, it would have been right at SEVEN WEEKS from when it was setup to when it would have actually taken place. In that time, we spent four days in the hospital and got four EEGs. Wow. Again, if not for the care of Dr. White and Dr. Nelson (at JoCo Peds) and Dr. Le Pichon (at CMH) this would have been our first EEG!!

However, there is, of course, one big reason all of this has happened.

God.

It's amazing how this season in our family's life has morphed our faith. This has proved that it most certainly is the trying times that test one's faith. It hasn't been easy, and we'll most certainly have more obstacles to overcome relating to this, but it has been amazing to see His presence so clearly throughout.

God is great.

I've been saving the best news of that conversaton with Dr. Le Pichon for last. He told me (a couple of times)...

"I think she's cured."

The C-word. Big time.

Thanks to everyone for everything. We'll continue keeping everyone apprised of little Kylie's situation.

4 comments:

Laura S. said...

Yayyyyy! :) God is good. I'm so happy for all three of you!

Anonymous said...

Awesome! we love you guys!! Thinking of you often.
Katie and Jake

Anonymous said...

I am so glad to hear things are looking much much better for your little Stump. YIPPY!!!!

Anonymous said...

That last comment was from Karen. :)

 

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