Saturday, January 29, 2011

And it continues...

We've had a few scares since my last post -which is why I never got to the good stuff I promised. I will get to it soon. There are so many. But, first...

Seizures are no better. Actually they are worse. So instead of just being devastated that he is not having better improvement like last week, I've been beside myself with worry on top of that. He started having not only more of his typical pre-surgery seizures, but new and different ones as well. One that prompted the 8:30pm call to the on-call neuro at the hospital. He had what appeared to be a typical drop seizure only this time he remained dazed and wouldn't breathe for what seemed like an eternity. In reality though, it was only about thirty seconds. We've never had anything quite like this so I've never even been given a prescription for a rescue med like Diastat. Not that we would have needed it in this case, but I was not comfortable knowing how far out we live and not having anything like that on hand...just in case. I didn't trust our past experiences. I don't trust anything anymore. Nothing is going the way we had hoped -or even told by dozens of doctors and surgeons we've seen and spoken to over the past two weeks. Needless to say, I stayed up til the early morning hours just watching him sleep.

Then the next morning (yesterday), another new one. Uncontrollable lip quivering and up and down jaw movement. What was so strange about this one is that it appeared very mild, yet he was so out of it once it was he'd just had an exhausting tonic seizure.

Of course I called our epi. And, of course he didn't return the call himself (even after I specifically asked that I speak to him or his nurse practitioner -whom I'm very comfortable with- directly). The word back was...The increase in seizures could be due to a delayed response to the Benedryl (I can be a gullible person, but I don't buy that). Do not give any more Benedryl (he had 3 doses total and it had been 6 days since the last one). Watch him over the weekend and call on Monday to report his condition. If there's no improvement, the LGIT (low glycemic index treatment -it's like a liberal form of the ketogenic diet) will likely be initiated. Instructions can be given over the phone and no hospital admission is required for this one.

He seemed to do slightly better yesterday than the day before. Until this morning. Cluster after cluster, drop after drop. Two hours of being awake and he'd seized nearly sixty times. I called Chad to tell him an ER trip was in our near future. I feared post op complications. How the heck could he be worsening so much?? I imagined swelling, bleeding, you name it. The on-call neurosurgeon rejected all of those suspicions. He said it was too far out since the surgery to be seeing any of that based on an increase in seizures alone. He didn't have any other symptoms that would make him suspect any complications related directly to the surgery. He didn't recommend that we come in. He didn't discourage it though and said they would certainly check him out if we did come, but he didn't think we needed to. He was actually the one that released us and he remembered us. He was surprised that Austin's improvement had declined (he's not the only one) because he remembered how well he was doing.

Really. How can 80-90% initial seizure reduction go down so drastically so quickly? Really. I'm completely lost.

Like I mentioned before, I keep replaying past conversations I've had with ALL the doctors and surgeons we've talked to. Nothing. Nothing prepared us for this. Even the speculations that this was unlikely to stop all the seizures. It certainly didn't prepare me any when the surgeon came out and the first thing out of his mouth regarding the surgery was they were confident they got the majority of the seizures. And it definitely wasn't when our epi (Mr. Doom & Gloom himself) came in to check on us and said he was really really pleased with how it went. They all just knew we were in for great improvement.

Update: It's been several hours since I started this entry (duty called, Austin woke up from his nap), and I'm relieved to say there's been some improvement since this morning. I'm still holding my breath, praying, crossing my fingers and my toes, and hoping this continues. That's one of the hardest parts. No day is the same. Every single day brings us something different. Even morning vs evening. He could have a terrible morning and a wonderful afternoon (and vice versa).


Jamie said...

Seizures for our kids are like that. SO Unpredictable! has been like that ALL the way back since I can remember... Madie can have horrible mornings and wonderfull evenings..or the other way around!sometimes I see alot of jerks and twitches and sometimes I dont...she still has some when she sleeps too. I am always worried when I bring her to preschool that I will get the call to come pick her up after a huge tonic seizure..which we STILL see once a week... Your post is breaking my heart...I wish so badly that we could all erase the word seizure from our vocabulary. :( Hoping for better days and Hoping that Madies keto diet begins to work its magic. We need a little Magic here. (((hugs)))

JSmith5780 said...

I am SO sorry. I wish I had a better answer. I will say, if you feel better/safer going to the hospital, do NOT second guess yourself.

Thinking of you and sending cyper hugs {{{HUGS}}}

Sophie's Story by Elaine said...

Devastating. That is the only word I can think of to describe this post. Brain surgery is hard enough to recover from as is. I am so sorry.

happy's mommy said...