We wanted seizures...and that's what we got. I got a nice chunk of sleep from 8:30-2, came back to the hospital, and as I walked down the hall towards Julia's room I saw people going in talking about "grids" and "seizures". My heart jumped in my throat with equal parts hopefulness and dread....this was it. I entered the room to see the tail end of a cluster, and what a cluster it apparently was. Michael said he had a very hard time keeping her restrained enough that she didn't hurt herself or any of the monitoring equipment. The cluster lasted a good 15 or 20 minutes and was typical of her normal seizures (except more severe), which is all good and exactly what we wanted to see.
Her poor face is so much more swollen than it was when I left her at 8pm. Both eyes are almost completely closed and it's heartbreaking to see her like that. She's still just as sweet and happy as ever and it doesn't seem to bother her very much. I don't even think I'm going to post a picture of it (don't want to upset the grandmothers, you know). Everyone assures us it's very normal and to be expected.
So apparently they want her to have at least a few more seizures and a chance to review the data before any meds will be started. She'll get Versed if she has another monster cluster but other than that we wait until morning and for neurosurgery to take a look at everything.
I've been spending some time tonight reading once again through Sophie's story for inspiration, strength, guidance...the usual. Tonight I found a nuggest that made me smile... we are in the same room, 586, that she was at this stage in the game. Just a little detail but kind of neat.
8 comments:
How bizarre is it that I read Julia had a cluster and I started crying...out of relief! Oh this crazy crazy life...
But they need the info...and I know you guys are relieved too.
((((((((hugs)))))))))
...danielle
I'm glad you got a little rest. And the doctors are getting the info. they need.
We love you guys.
ang.
The fact that you are in the same room is priceless. And GREAT that they got so much info with a full-on cluster. Awesome.
Good thing you had that extra day scheduled between surgeries...it's crazy how things just work out like that.
It is so hard to see your baby girl like that. But it is very normal.
I am glad you are finding comfort in my blog the way I found comfort in Jackson's blog. It put my mind at ease at times. Even though I trusted the doctors, to hear it from another parent was very calming.
I am hoping the data is still pointing to just the focus in the temporal lobe and the resection will be minimal.
It seems so odd to be grateful for seizures but I bet a bit of doubt was creeping in when no seizures showed up - now these unmedicated severe seizures area a testimony to why we are in this position.
How awesome that you are in the same four walls that Sophie and family were in such a short time ago experiencing many of the same emotions and surgical process. Knowing Sophie is seizure free and soon Julia will be too!
Hey Lisa,
First of all I am happy and relieved that u finally got someseizures.And u know what,
Kanak was in room 586 too before the resection.
I know thare are only 5-6 rooms for VMR, still the probablity of all three being in the same room?....I don't know.
Hopefully today Dr. Asano will get every information he wants from the mapping point of view.
Still in our thoughts,
Anita
Hoping today is a good balance between seizures for data and comfort for Julia!
On the lighter side, I think it is a kid secret on how to hide symptoms to make parents feel incompetent. Your child has a 101 all day and is lethargic never moving a limb off the couch. Get to the docs office, no fever, child becomes Olympic athlete in the waiting room. Doc looks at child, looks at you, looks at notes... so why are you seeing me today? Go figure...
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