Everything happens for a reason.
There is a reason why we weren't already discharged.
Partly...I believe...so Julia's mommy and I could grab a cuppa Biggby's together. Lisa...I think you guys should consider moving East! A cute little cottage right across the street from us is for sale...
But it was also partly because Trevor had a breakthrough seizure. If we had left yesterday or today...this would have happened on the road.
I hate myself for missing the ques. He was acting weird. Off. Kinda scared. Unsettled. Crazy eyed.
I've seen all these things before. And I still missed the signals. And left him. To run downstairs and grab Jonathan a coffee. So I wasn't there. I hate myself for that too.
Poor Jonathan. To be alone. When the Monster reared it's ugly head again. So much for slayed. Now he has the fearful eyes. Although things have settled down some.
Couple tidbits...
It was NOT an Infantile Spasm seizure.
I actually had to send a description to other seizure moms...because we had never seen a seizure like this before. His eyes deviated upwards and to the right. His body went rigid towards the right. Shook slightly. And he moaned throughout. Jonathan believes it lasted about 1/2 a minute. Although he's not sure. It happened so fast...yet felt like forever. My seizure mommy friends all concurred that it was a tonic seizure. They all have been a gi-normous support today. Immediately responding to my facebook crazy talk. We may all only be connected by cyber space...but my heart doesn't seem to care. You girls made me cry and helped me be strong today. I love you...
His Dilantin level was low earlier. And the seizure occurred just as they were administering a booster. So it's quite possible that the seizure happened because he wasn't adequately covered by meds. The problem is...I've been living in the land of med-resistant seizures for so long that it's really really hard to wrap my mind around believing in a drug. That would be why we chose surgery.
He only had ONE seizure. Which IS better than clusters all day long.
I have been assured that they have seen other post-hemi children have seizures...it does not mean the surgery is a failure. Even though in this particular moment I'm suffering a very strong case of Buyer's Remorse.
15 comments:
I know you are so ready to get out of that place, but you are right...so much better the breakthrough happened there and not on the road!
You shouldn't be so hard on yourself...all of you have been through so much, I can't imagine the weight of the week you have had.
Tonics suck...it's better you didn't see it..praying you NEVER will...because breakthroughs NO MORE!!!!!
that's my prayer...huge hugs....Deb
It's crazy that it is called a breakthrough seizure when breakthrough is usually associated with positives.
Sucks. For all of you.
reading this post gives me such a mix of emotions...i cant imagine what you must be feeling.
i agree, SOOO glad that you guys are still there and not on the road with Trevy. im sad that the seizure monster is still lurking around, then relieved to hear that it wasn't an infantile spasms seizure.
really wishing i was there now to give you guys a ginormous hug. you guys are both so amazing, and strong parents. Trevy is as lucky to have you two as you guys are to have him.
so glad Julia's mom is there for you and you are for her. thinking of you all so much.
lots of love and prayers,
jody
Oh, I am so so sorry. But I am sure having one doesn't mean they are here to stay. But agreed that it is better that you were still there, instead of behind the wheel. And that you got to have a quiet moment with another mom.
Prayers still coming your way.
Hey, we can either laugh or cry, right? I have done my fair share of crying this week anyway.... I am glad the docs helped calm your fears, even slightly. Trevor is doing awesome considering what he has been through in one weeks time!! God love him. If it wasn't for that crazy puking!!!! Hang in there girl. You are almost there...home, that is....
love and hugs,
Marcia
Hey again....
I know I don't know much about this surgery stuff, but from all I have read from you and other surgery parents, it really seems like Trevor is going to be one of the very lucky ones...
I can almost FEEL your heart sinking with this seizure coming up like this....But the GOOD news is that they don't think it was I.S.....I.S. is the biggest enemy...Many of the other seizure types CAN be controlled VERY well with Rx....So getting him on the RIGHT meds and RIGHT doses while he heals and for the time being will help keep the seizures at bay until he is able to hopefully come off all meds...
Sometimes, I feel like I shouldn't even be commenting to you parents who are doing the surgery thing....Like I have no business chiming in since I haven't been where you are.....But I just can't help giving you guys love and encouragement from a very weary fellow soldier!!! Hope you don't mind!!!
Fondly,
Cyndi
Hugs. I know it will get better. No scientific reason... but I know it will.
So sad to read about the breakthrough sz, hope there are NO more.
We are a few weeks behind you, heading for monitoring & surgery in November (In GOSH) (fingers crossed anyway).
Thank you for posting your updates, keep them coming.
THinking of you all and best wishes. Speedy recovery vibes to Trevor x
I wish I was there to give you a hug in person. Don't look back. Just concentrate on getting him better and out of there so you can all heal at home.
Deb...it's so hard not to beat yourself up. Ugh. You're probably right...Jonathan was SO shook up afterwards. After spasms...anything longer than a second feels like an eternity. My poor guys...I love them SO much. (((hugs)))
Ken...you make a really good point!
Jody...you have such a soft sweet heart! Love you, hon.
Liz...thanks for the prayers! It is such a comfort knowing we are being saturated...
Marcia...yep...it's laugh or cry. And I do em' both depending on the moment! ;)
Cyndi...you're such a loon! I love everything you have to say! And the reason why...is because your genuine concern and love for me and my son is dripping from everything you say! I never take offense! Say anything you want here!
Sinead...I'd feel better if you had the science to back it! ;)
Elaine...I know you're right. It's so hard not to look back though. Two weeks ago...I had a happy vibrant little boy who was running and splashing in the water fountains downtown. And now it's just all ugh. But I know you're right...and I know we won't be here forever. OOOOOOH...and my parents are bringing Toby & Bristel for a visit tomorrow! That'll help the heart too!
Last but not least...Katy...
Where is your little one having surgery?
Listen...this is the hardest scariest thing we've ever done in our lives. But even in spite of our setbacks...we just know it was the right choice. I wish I were 10 years from now so I could give you all the happy report. But I'm smack in the guts of it. Buuuuut...I have a group of other surgery moms and dads that have just been a huge crutch through this. Have you joined the hemi yahoo group? Also...the Hemispherectomy Foundation has a wounderful site and you can sign up with them...and they'll send your little one a carepackage! It was a really sweet gift! Please feel free to email me...I'll even give you my cell in case you need to freak out with someone who knows what you mean! My email is on the sidebar...
(((((((hugs))))))) I know this is tough. I'm not even sure which was harder...the build up before the surgery or now! But I do know...Trevy's eyes are brighter than they've been a really long time. And that gives me deep hope!
...danielle
Oh sweetie, I wish I knew what to say, but I don't. I'm not in your shoes ( and at this point looks like i won't ever be), but all I CAN do is try to be here for support and say that things will get better. I have to hold onto the HOPE that they will. I guess i'm kinda living vicariously through you guys since you've been given this opportunity at hope. SO hang in there, and seizure beast: STAY AWAY!!! Love ya!
I hate that our kids have had to go through this, but I'm glad I got to meet you because of it, or in spite of it. I can't tell you how much I enjoyed our chat session yesterday...felt so good to finally talk to a person who truly gets it.
Again, so sorry about the seizure. It just stinks to have to worry about anything else, I think you have enough on your plate!
Danielle - thanks so much for taking the time to reply to me - you have enough on your plate to be offering support to others right now!
We are being treated at Great Ormond St (London, UK). We are due back there tomorrow to meet the surgeon and they have told us there is a slot available in 'early Nov' for the invasive monitoring + the op itself.
So no exact date yet, and no exact name for the op either. Probably not hemi as his frontal lobe (so far) has shown up normal. They are talking about TOP (Temporal- Occipital-Parietal) removal/disconnection so hopefully we;ll know for sure after tomorrow.
Keep well and strong for Trevy and hope his eyes stay bright!
(Henry's been in and out of clusters all day today & I can't remember when his eyes were last bright).
xx
Katy...offering encouragement and support to other moms is my coping mechanism! ;) Well...you being there explains why I had no clue what GOSH was! I can stop feeling silly now.
I know I've posted fairly graphic information here...but I've done so because I have a healthy hunger for truth and education. I craved knowing what we were getting ourselves into! And if you've sifted through these posts of late...you probably do too.
I'll tell you that for me...the hardest time was between the two surgeries. Having Trevy's eyes swollen shut. That was heartbreaking. Little advice...that I got too late. Try to keep his little head as elevated as possible to decrease the swelling. He'll probably still puff up...but it can't hurt to try. Also...I used to the keep him comfy method on pain management between surgeries. The nurses were very reluctant to give narcatics every three hours...but Trevor was in intense pain during those days between the surgery. After the "real" surgery I found his pain has been much less! And we can manage with motrin and tylenol.
Anyway...TMI...I'm sure! But really sincerely...you can email me anytime!
((((((hugs)))))))
To bright eyes!
...danielle
Pretty sure Jude and Trevy are sharing the same 'monster' type. Eyes up, to the right and a little moan if it's a biggie. Can't really remember if Jude had these during his IS so not sure if it was something new or something borrowed, certainly it's something blue :-(
Anyhows - Mom's are always right, but don't let my wife or my mom know.
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