Every story so unique. Each it's own. No two brain surgery journeys alike. Our little snowflake kids.
One of my biggest fears is now behind us. I was slightly freaked out that Trevy would be one of those kids who don't have seizures. Which causes their surgery day to be pushed back.
He is not. Which is good. And sad...because they have been extraordinarily intense. I have lived each day this past year watching my son battle clusters of seizures from dawn to dusk. And can count on one hand the times I've reached for the rescue meds. So when I tell you that the first cluster had me freaking out. I mean it! Thank God Dr. EEG was compassionate. Because Nurse EEG Techie was not so much. See...that first really nasty cluster wasn't captured on the reading because they were busy Sensory Mapping him. I was slightly panic-ed. And let them know. Which is when she calmly told me that Trevy would probably have more seizures than I was comfortable with. I nodded my head. Raged in my heart. And Dr. EEG sensed my discomfort.
I love when the doctors listen to the moms and dads. Seizures don't freak me easily anymore. Those did. And he noticed.
Anyway...
Jonathan and I finally stepped out to grab a bite to eat. On campus. We were gone maybe thirty minutes. Come back to find Dr. EEG waiting for us. Turns out Trevy had another massive cluster while we were slurping frosties.
And that data gained was enough for them to make the rescue med order. He made sure we knew that immediately.
We asked if they know where the seizures are originating? He said they feel VERY confident they are coming from one specific region in Trevy's left frontal lobe. And then spreading to various other regions. He also said they witnessed the lip smacking that I have beat to death speculating to be complex partial seizures. They are! I hate that it feels good to be right about my kid having seizures. But it does. Because I knew it all along. Mommy gut is worth it's weight in gold.
Anyway...
I know I'm prejudiced. I know I'm mommy. But Trevor is a cherub. He looks beautiful even like this. I don't know what I was worried about?
Oh...and when he had that first really nasty cluster. He woke up. And didn't just look at me...he KNEW me! And reached for me! Which his drug filled little tummy couldn't handle and caused him to spew. But still! My baby knew who his mommy was!
That was huge. To me.
Anyway...if you think I'm posting you to death here? You should see my FaceBook!
14 comments:
Isn't it reassuring to see that they are still the same little person they always were? So glad the first surgery is behind you...and sorry about the intense seizures. When Julia finally started having them they were horrible too. It doesn't take them too long to get the info they need thankfully. Here's hoping they start the Fosphenytoin soon (I assume they do that for everyone) and he can get a break...hopefully forever!
And I know you've got a small army of people to contact who have been there done that, but I also want to offer my assistance, any time of the day or night if you need to call me please feel free. Let me know if you need my number again.
I'm glad you got the data but sad poor Trevor had to suffer so much for it. Ask about Zofran to settle his tummy.
Thanks Lisa...it means the world to have the support of others who've been here.
Sinead...they gave him some Zofran. I'm hoping it helps. He's already vomited again. Our nurse assures me that it's normal...and I'm sure it is. It's just he never pukes...and it's hard to see.
Anyway...
...danielle
Jackson had the most intense clusters right after the first surgery! I was so glad when they started the meds. Dr. Asano is the best at EEGs. ;-)
Everything sounds like it is going well! Hope the seizures slow down now, but sounds like they have good data! Praying for peaceful rest for Trevor and you all tonight!
Hey!
I am so sorry he spewed but glad they got what they needed fast so he could get his meds. I hate that I can get your FB updates at work. They have that site blocked from us! UGH! I just checked my FB and saw all your little updates. :o( sorry i missed them.
Praying hard for you and jonathan and trevy.
C
Emma puked for two days. The Zofran and the iv fluids kept me sane. Also I should mention if he gets unusually agitated assume it is pain and ask for pain meds. Hoping for sleep for all tonight but I am a realist. If you at least try to rest it will help a lot. It will be a long week.
Glad they are getting the info they need & that you were right. Why don't Drs listen to the parents of the kids?? we are with them 24 hours a day, not 20 minutes every 4-6 months!! And I'm so happy that he reached out for you b/c i know that had to soothe the stressed out Mommy heart. do you think it could be the anesthesia making him throw up?? I agree Zofran would be a good thing. Hang in there, and I'm appreciating the updates...I've been a total FB junkie today looking for them!! {{hugs}} & love!!!
Hoping for a peaceful night for all of you...
(((hugs)))
Thanks for the update. I am so sorry about the vomiting and the rough seizures, but I guess it is better than having no data. I hope they let him have meds to stop seizures soon. And he looked super cute in his baby scrubs....
I could not handle the FB updates, too. The two photo posts just put me over. Esp the ones of his great-grandparents. Wow.
Now off to say my special prayers for your family. Barbara
Keeping you in my thoughts and prayers...I know how hard the next few days will be for you guys. And, yes, mommies know best...our Trevor too was having some strange blowing behaviors...(autistic like)..Dr. EEG said mark them down when he has them and push that magic button to record them. Sure enough, they were seizures and all disappeared after the surgery...woo hoo! After some really hard times, little Trevy is going to be doing so great...I can feel it!
Hugs,
Sheila
i'm happy u're having the chance 2 post so much - here & on FB! still praying - u're such a trooper! i'd b a puddle of weepy snot if i was going thru what u're going thru...i admire u more than u'll ever know!
xoxoxox,
sharon
I can't get FB at work either so come 4om I run out the door so I can get home to catch up.
Hugs to you all!
So much to go through for your miracle...But the days are clicking away!!!
Like my mom used to say to me when I was 4 1/2 mos. pregnant..."It won't be as long as it HAS been!" (Moms!!!)
I can only IMAGINE it...I cried when I read he reached for you and knew you....
Will keep praying and clicking these days off with you....
Cyndi
Post a Comment