Thursday, January 27, 2011

First the not so good

I guess I'll just dive right into it. No sense in stalling or beating around the bush.

This has been an awful week for Austin and seizures. Awful because he just had brain surgery to relieve him of some of this. Yes, we still see improvement in every area. But, dang it, this is NOT good enough considering what he's been through to help him. There. I said it.

I've been holding on to that for days. Scared to say anything to anyone besides my mom. Because she is here with me every minute of everyday, so she knows and I can't hide it from her.

I knew not to expect a miracle. I prayed for one, of course. I tried to expect it (because you need to expect your prayers to be answered -that's faith, or so I'm told), but there was always that little piece of me that said I needed to be realistic. So I didn't expect 100% seizure freedom. I was crushed to see post-op seizures. Crushed. Regardless of what the doctors said ('s not uncommon, don't freak, blah, blah, blah, etc.), I did hope we wouldn't see anymore though. He'd have a rough cluster and my heart would sink. But, then, maybe nothing for hours. HOURS. We never EVER got 3+ hours with no seizures. Much less 8-9. Never. So, after several days of this, I thought I could handle it. Especially since they were still considered post-op seizures. The ones they said they generally write off anyway. And when he did have a cluster, it was usually no more than 7 or 8.

Then came Saturday. The morning after we discovered a strange rash (of course he gets weird stuff on Friday nights...always). By the way, our neurosurgeon was paged and he told us to discontinue Austin's Decadron & Zantac (steroids he was taking for swelling and the Zantac to protect his tummy from the steroids). We were in the weaning process for the steroid, but because it was the only drug Austin had never been on before, he wanted to stop it in case it was an allergic reaction. I was also instructed to give him Benedryl every 6-8 hours. I vaguely remembered a nurse telling me a couple years ago that antihistamines tend to lower seizure thresholds -which is what Benedryl is. Now, back to Saturday. Austin had a mean cluster of nearly 30 seizures. I blamed the Benedryl, of course. Then nothing for about 9 hours. We had a wonderful day...nearly all day. A vibrant, smiling, calm, laughing, interactive, responsive, non-seizing Austin for NINE WHOLE HOURS. Unheard of before surgery. The rash wasn't going away, but he didn't seem to be bothered (other than a little scratching here and there) by it.

Then Sunday. The rash was looking much better so I decided no more Benedryl. Seizures weren't great, but he still had hours between some of them. Happy, alert, calm, interactive once again. Until Sunday night. He started having these strange bursts of laughter for no apparent reason. I've heard of laughing seizures, but I've never seen one. I'm not saying that what he was having, but it was very weird. My gut told me something wasn't quite right. I'd been paranoid since Day 1 about everything, but I knew this was not good. He also developed a new behavior since surgery. He picks at his right thumb. This increased quite a bit. He seemed to zone out a lot more -like pre-surgery Austin.

Oh, and before I forget, he started having seizures in his sleep last Thursday or Friday night as well. I'd never seen him have them like that before. He may only have eight seizures all day. But as soon as he started drifting off to sleep, he'd have a couple. Then he'd wake up. Drift off again. Have a couple more. Then he'd just sleep right through them. He'd have more in an hour of sleeping than he'd had all day. Before surgery, he'd typically wake up, THEN start having seizures. I can't recall ever seeing any while he slept. This worried me. A lot.

So, by Monday, I started to unravel. He had stayed up 14-16 hours at a time over the weekend. WOULD NOT take a nap. Then he only slept 8-9 hours at night. So, after a nasty morning cluster of about 10 seizures, he finally seemed to want to take a nap. Seizures kept waking him up. Sleep. Seizure. Wake up crying. Sleep. Seizure. Wake up. About four or five times.

Drops started coming more frequent. He was no longer getting hours in between anymore. An hour -two at the most. I was flashing back to our life before surgery. Sure, seizures are still down overall. But, if they're attacking him every hour or so, his life may not be much different in the long run. He seemed to zone out more.

Tuesday. Even more seizures. And I swear, that new sparkle in his eyes seemed to start fading.

Wednesday. More than Tuesday.

Today. At the rate he's going, it will be more than yesterday.

That's the best summary of his seizures I can muster while I'm gently typing so as not to wake him while he naps just 10 ft away from me.

We have instructions to increase the dosage of his current seizure med and will have a follow up with the epilepsy specialist in a couple weeks. He still keeps saying seizures the first month are common. I keep replaying our neurosurgeon saying, I really think we got the majority. And our usually very depressing epi flashing a big smile and telling me how optimistic he is. Hugging me. Encouraging me. Very uncharacteristic of him. I keep revisiting that in my mind for strength. Because what Austin's doing right now is taking all the strength I have -and then some. They said this was expected. But here we are, two weeks to the day. I expected gradual improvement over this month. Not the opposite. So, it's scaring the shit out of me. That it may actually get worse than this.

I can't give you such a heavy load of depressing junk and not recognize the positives though. There are many. Whether (at this point) it's worth him having part of his brain removed...I don't know. Maybe time will tell. It's too early to start making assumptions (about that AND seizures). I promise to share these positives. Hopefully tomorrow.


GB's Mom said...

I know nothing about seizures, but I do know how to pray. Praying.

Sinead said...

You could ask for a head ct to make sure fluid is draining properly. I hope this all gets better soon. I know all too well the pain of seizures after surgery. It is 100 times worse than seizures before surgery. I will say that miracles come in all shapes and sizes. Brain surgery was a developmental miracle for my daughter but we were not able to stop all the seizures. Now we are down to one seizure a month with the ketogenic diet and this combination of surgery and diet is the magic one. I hope for better days.

happy's mommy said...

I agree with Sinead...get a CT.

And I'm so sorry, hon. I'm sorry. And I don't know what else to say.


devon said...

ugh, so so devastating. Praying for you guys. My heart is so sad right now. All I can say is praying, praying, praying!

blogzilly said...

Get the CT, and try to be water. If you don't you will lose it. I know, cause it's my greatest struggle, I usually can't and I lose it all the time.

Hang in there.

JSmith5780 said...

I am so sorry Holli. I am thinking of you all and praying for you.


Sophie's Story by Elaine said...

Oh Holli. I don't even know what to say. My heart is breaking in pieces. This has to be so hard to be seeing so many seizures. For him not to be able to get a good night sleep. I am so sorry...