8.20.2009
knock knock...
Who's there?
October.
Okay...I'll play...October who?
October...as in just this morning Dr. Rockstar's nurse called with dates. Written not in pencil...but pen!
I know that was lame. But you're reading aren't you?! And besides...I'm allowed a little creative slump latitude. My son is having BRAIN SURGERY after all! And now I know WHEN!
Sunday October 4th...MRI
Monday October 5th...PET scan
Tuesday October 6th...grid placement
See...this is a two phase surgery. The first phase...being the grid placement...where they shave his curls. Open his skull. And place electrodes directly onto his brain. Close him back up...with the wires protruding. Because they must be connected to the equipment. And wait in the PICU for the seizures to provide the necessary data before going in for the real deal. Apologies for being graphic. But then again maybe not. After all we live in the real world. This is what will be happening. To our son. This is what we will be living. Beside our son. I did look for pictures. But flippin' doctors. Not gonna publish anything without a flippin' fee. You can purchase your very own "A Pictorial Guide to Pediatric Epilepsy Surgery" for just $30 and change. How's about I take my own flippin' pictures. And share them...for free...with families that are facing this nightmare miracle.
Anyway...
for the grand finale...
Friday October 9th...hemispherectomy
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28 comments:
Wow. Can you copyright that term "nightmare miracle". Apt. Perfect. Exact.
Barbara
So glad you have a date set. That makes this all the more real doesn't it....frighteningly so. It is an awful, scary feeling, but it truly is a miracle surgery and Trevy will be able to move on with his life leaving those nasty seizures behind. Please ask away with any questions you think of...I would be more than happy to try to help.
Sheila
You can guarantee THOSE dates have been marked on our calendar and we WILL be praying. BTW, you were all mentioned last night to my folks here. They're praying and so are we.
Well there you have it...the countdown begins. I will be counting down with you. I know (well not really, but I'm trying to imagine) just how crazy these next few weeks will be. I am sure it will be a rollercoster of emotions. We are here for you if you need us.
I am still holding out hope maybe we get to meet you guys sometime in Detroit. A girl can dream....
I just know that things will go well for Trevy. I can't wait to see the pictures.
Okay....now you can breathe....at least for a little bit. It is really nice to have THE plan so now you can arrange everything else. At the same time, I am sure reality is hitting a home run about now. He will do fabulous. He will bounce back soooo fast and he will be....seizure free!!! Wow, what an awesome thought. You are constantly in my prayers.
BTW, thanks for all the wonderful responses on Hannah's blog. I appreciate you!! Hannah's first day went great. Blitzen did great too. But did I ever have a grumpy grump!! whew!!! We are waiting to see if her seizures start increasing now that she is back in school. Dr. Neuro thinks school may be her main stressor. So, time will tell. Still no word on VNS...come on already!!!!!
Hugs to you!!!!!!!!
Marcia
Barbara...agreed.
Sheila...I'll definately be leaning on you too! Right now I'm just numb. And in knots...until all the insurance approvals go through. Which I'm SURE will...but you know...
Joel & Cyn...thank you SO much for you prayers & support! We love you guys too!
Liz...this girl is hoping too! I would LOVE to meet in person! That way we can start working out future in-law jazz...I mean surely you've noticed how cute Trevy & Maddie would be together too! ;)
Marcia...it was seriously the sweetest thing I've heard in awhile about that bulletin board! I can only imagine though...how stressful school is for Hannah. And stress goes hand in hand with seizures. Ugh. And girl...I can't even imagine WHY they have not approved that for you yet! Seriously...come on! I HATE red tape!
...danielle
gosh i love u! show those greedy docs!!!
there goes superwoman, always her son's #1 advocate...not only 4 him & her family's sake - but also 4 all those other families...waiting in line behind her ♥
u r the most generous, thoughtful, loving, AMAZING woman i know!!!
xoxox!!! praying hard as always - even the kiddos r clued in2 Trevy's upcoming surgery & r keeping him in their sweet little prayers too
& u know what? i think kiddos prayers r worth double! ;0)
Sharon...I've heard my kiddos pray...and I TOTALLY agree! At least double! Thank you sweetie...and love you back!
...danielle
It's great news, you have your date. It's awesome. You may want a contingency plan and having certain things at the ready in case something opens between now and then.
Until then though? Hang tight...
wow wow wow
Hell yeah, take you're own pictures. Frankly, I don't know whatp parents did before the internet.
I am so happy for you Danielle. And so scared. And so excited. October 3rd is KC's birthday, so I kinda like that things will start a mere day after that lucky day :) That's gotta mean something good! I will be thinking about you so much between then and now as you make preparations, and try to stay sane!
Karen
I have some surgery pics on Sophie's other blog page...
http://surgerypictures.blogspot.com/
You can see where the wires are coming out of her head if you are wondering how that all works.
Crazy thing is...it is harder for me to look at those pictures now than it was to actually see her like that in person. Maybe because it brings back too many emotions that don't feel so raw anymore. It is kind of like childbirth. You forget about all the bad because you see all the joy in front on you.
I can't wait until you are on the other side...soaking in all the joys.
Wow...I can't imagine how you must feel right now...
I hope you know through the "net" Hudson's family is cheering Trevy's family on...
All I can offer is prayer...
prayer over your mind (nerves) right now, prayer over the doctors as you approach October, and prayer over your precious little boy, that you will be one of those very lucky families that gets their miracle.
Hugs from Seattle....Deb and Hudson
Oh, and p.s. thanks for taking the time to read about our craziness in the midst of your craziness, and writing me...YOU lift me up! :)
Holy cow!! That is so great to have the date... and in pen too! I know I haven't been in your position, but maybe make the countdown to surgery, the countdown of destroying the seizure monster once and for all...maybe that will help combat the fear of what is going on.
You must be in somewhat of a daze...like this is for real, Trevy is going to get his chance. I can only imagine the mix of emotions. So happy for you guys, praying for you always!
Jody
I have some graphic pictures I can send you. Ryan's turban fell off, so I clicked away. LOL.
I also have some good pictures of the wound with stitches. I'll have to dig them out. They used to be online at the IS Groups Kodak Gallery, but the group's account disappeared:-(
Erin M.
no way i can forget those dates either. we'll both be starting very significant new chapters on the same day. :) we'll keep praying, and love knowing the specifics to pray for!
we have those dates marked. You know too??? The Childrens Hospital 10K that i am running in honor of Trevy is on October 10th. Isnt that crazy? I will have so much more to run for knowing the monster is gone on that day.
Love you bunches!
C
Yikes, it really is real! And soon!
You know I'll be praying and cheering you guys on from cyberland. I'm one of Trevy's #1 fans!!
Love you guys! Hoping for some major distractions to head your way until Oct arrives...
(((hugs)))
Ashley here (Matthew's mom) I'm so happy that this is going how you want it to. I was showing Matthew the blog and explaing Trevy's condition. I was tearing up going over it with him. You have such amazing strength. I know it will get you through the surgery and follow up. We are all thinking of you and wishing you the best.
Matthew would love to have Toby come over and play. Maybe Coach Ron can also take them to the ball field and throw them some balls. We'll miss seeing you at fall ball, but I'm sure Toby will have a great time in soccer.
Oh, by the way, in case you did not know there is a write up in this week's Sakonet Times about the team's season. There was also something in Fall River Herald either Wednesday or Thursday. Ron scanned them. If you don't get a chance to see them let me know, and I can email them to you.
Hugs to all of you.
Ashley
HOLY MOLY!! That will be here before we know it! But atleast it gives you something to wrap your head around and to work around. I don't know how in the world you do all that you do...definitely agreeing with Sharon on this one...SUPER MOM "here to save the day"!!!! Your kiddos (especially Trevy) are so very lucky to have you. Want to adopt me??? ha ha ha! We would have a hard time explaining the whole age thing and all, but it would be ok. =-)
{{{hugggggggs}}}}
thats so awesome danielle! that you finally have dates! :]]]
<3333
thinkin about you guys. :]]<333
Wow, wow, wow!!!!
Glad you have a date.
It's amazing what science can do. Amazing. Frightening and amazing.
Cheering and praying for Trevor, your northern friends,
Margo
Ken...I'll try. To hang tight.
Katy...seriously! I think I'd really be a mess without the net! It's my life line...my coping mechanism...my support group!
Karen...we're driving. Wonder if our GPS will lead us to crash KC's part-ay!?
Elaine...I actually looked at those pictures when you posted the link during Sophie's surgery. I think I left a comment saying "I hate you". ;) I take it back! xoxo
Deb...I MEAN it...you are quality! And so is your courageous little man!
Jody...it IS a mix of emotions. It's like God took every feeling ever created...and stuck them in a blender. And poured it into my heart!
Erin...I love you! I'll email you when I feel ready to look at the pics...
Abbe...First...I have a confession. I always almost call you Abs. You know nicking is my weakness...right? It's part of my charm! Second...if we felt "connected" before?!?!?!
C...total God thing!
Holli...love you back!
Ashley...WOW! SO nice to hear from you! You need to email me your number! tanzie213@yahoo.com And I know Toby would LOVE to spend time playing ball with Matthew & Coach Ron! Ohhhhh...and I missed the papers! For some reason I thought there would be an email letting us know...and when it didn't come I thought maybe the article would be next week. Anyway...would you email me the articles?!?! Thanks!
Monica...you are ALREADY adopted! As my cute younger sister of course!
Brenda...I MISS you! xoxo
Margo...it is amazing. We feel so blessed to live in the age that we can be offered these "miracles". Thanks for cheering us on...
...danielle
Are you going to be passing through Chicago?! My terrible sense of direction is showing itself here...haha. I know where you live, and know where you are going...but don't know if we are in between there! Of course, if you were you would HAVE to stop...I will meet you off the highway at a truck stop if I have to : )
Karen
OK...It is on my calendar...My new friends are keeping me awfully busy these days with all of these surgeries!!! I LOVE it!!!
I hope that it is such that you will be able to update us from time to time from Detroit....I know it will be difficult to do, but we will be so anxiously waiting....AND PRAYING!!! Your little Trevor....Just think!
Cyndi
Karen...I have nooooo clue! I was just guessing we'd be close! ;) But I'm sure we'll be in a hurry...depending on how Trevy does for the ride.
Cyndi...I've been surprised at how difficult it's been to put together thoughts for a post...and we only have the surgery scheduled. But I am going to update! Promise... And I adore you! xoxo
...danielle
Completely understand : ) Keep it in mind though in case you need a last min. kid friendly place to stop for lunch : )
Wow...I have to say that after reading the post, I've had about a dozen differnt thoughts and feelings just flood my head.
First of those feelings was joy that the date is finally set.
Next came fear. I know, I know, We shouldn't think like that, but since it's reality and you've pointed out that we live in the real world, I can't help but feel that emotion.
Quickly behind that fear, came excitement. Excited to see Trevy come out of his surgery like Sophie did and just kick butt. It's gonna be like having a whole new side of Trevy that none of us have ever seen before, and I can't wait.
D, although we've never "met" I love you all and I'm keeping you all in my heart and in my prayers. {great big cyber hugs}
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