Friday, December 4, 2009

In Which Connor Has Another Seizure

Today was not a very good day, unfortunately. Connor had another seizure-- his longest ever-- and we had to use his Diastat for the very first time.

Jer's brother was coming in to visit us for the weekend, and it was about five minutes before I had to leave to pick him up. I was getting Connor's stuff ready to go, and noticed that he was making some strange grunty/wheezy noises. Connor was sitting in his chair next to Jeremy, and he was looking down at his feet. I asked Jer if he was okay. Connor would still move his arms and legs and was still responsive, so Jer said that he thought that Connor just "needed to go potty." After two or three more minutes of listening to him I came over and lifted him out of the seat.

Connor was still responsive-- he would track, blink if you blew air in his face, etc, but he seemed to be having some difficulty breathing. He was also really, really drooling, as if he wasn't swallowing at all. I got him a new diaper and went to change him, but he was totally dry. Something just didn't seem right. A few seconds later his jaw started to tremble and we knew he was having a seizure.

I set him in Jer's arms and ran for his oxygen. After we put his nasal cannula on he stopped having trouble breathing, but the trembling progressed into a rhythmic jerking of his jaw. He was still weakly tracking and could move his arms and legs. Jeremy grabbed the camera and started video taping so we could show the neurologist what he was doing.

We didn't really have any instruction on what to do here-- it was kind of a judgement call. Normally we'd administer the Diastat two and a half minutes into a seizure, but normally during a seizure he's not breathing, which wasn't the case here, so we weren't sure if we should give it at the same time or wait a while longer. In the end we waited until after he'd been trembling and/or jerking for five minutes. Right before I gave it to him he stopped breathing and went unresponsive and blue on us. I did rescue breathing until he came back, but I didn't have to do it very long as the seizure stopped about a minute after I gave him the medication. We're unsure exactly how long the whole incident was, but from the time I noticed him making the odd noise to the time he started breathing again it was probably somewhere around eight minutes.

We were told to call 911 any time we had to use the Diastat, so Jer did that while I performed rescue breathing. The EMTs came and checked him out. Since he was breathing well (breathing is a potential problem with Diastat, which is a respiratory depressant) and we seemed to know what we were doing they decided he could stay at home rather than going to the hospital. Connor has been asleep ever since.

Of course it's a Friday. Also Connor's neurologist is out of town until the end of next week. And we have no more Diastat. This is not a wonderful situation to be in, but we'll work on it. What this means, though, is that Connor's current medication is no longer doing its job. That is a scary, scary place for us to be.

Please keep Connor in your prayers as we try and figure out where to go from here.



Rachel said...

So sorry to hear you have had this worrying time with Connor - my thoughts are with you all.

Could it possibly be linked to his swine flu jab? I know a few children in the UK who have developed high temperatures following it.

Hope he is feeling better today and you are all OK.

Rach x

leah said...

I will most definitely keep Connor in my prayers. I hope the docs can figure out a better medication to control his seizures.

Do they have a protocol for you to follow for things that happen over the weekend? It was really smart to take video so that you can show it to the neurologist.

I'm thinking of you guys- I am praying hard that he remains seizure free and that you can get into the neurologist first thing on Monday.

Galen said...

Most of us can only imagine what it is to live in such a heightened state of vigilance all of the time. Your sweet little boy is blessed to have such capable parents, who know what to do in this kind of emergency. I'm praying that his seizures get under control and that you all have the strength and care to carry on.

Niksmom said...

Keeping you guys in my thoughts and prayers.

Anonymous said...

Praying for Connor.


Julia O'C said...

Jess, I'm so sorry. Poor little Connor. Of course he's in our prayers. What a scary, scary situation to be in.

It was brilliant to videotape it.

You're in our thoughts and prayers.

xraevision said...

I am so sorry to hear about Connor's seizure, and especially that it happened on a Friday. It was very clever of you to videotape it. Let's hope this will be instructive and valuable for the neurologist. You are all in my thoughts.

Anonymous said...

Wouldn't there be a Dr on call that can give you a new prescription in case you need it?

Our prayers are with you all.

Julia said...

Not good at all -- I'm so sorry about the incident and the stress and anxiety, as well as how wearying it was for Connor. Sweet, sweet little boy. Give him a hand squeeze for me when he wakes up, and I'll be thinking of all of you.

Bronx Cataldo's said...

Sorry about the seizure its sounds something like what Finnian has yesterday.
You know you should be able to call the doctors office and get who even is on call to call in an emergency script of Diastat or call the peds office and ask if they would write you a script for the diastat.

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