Firstly...
Evidently there is some crazy bogus "Policy" in place preventing children under three from having a big bed. It's crib or bust baby. And trust me...I've talked to everybody about this! I'm very persuasive too.
Secondly...
Dr. Rockstar and Dr. EEG Wizard met with us this afternoon with "The Plan".
The damage to Trevy's brain is very widespread. So widespread that it will require removal of his whole left hemisphere. Minus his motor cortex. Although they do believe there are seizures originating within his motor cortex. In the past...they would remove it. And the child would have permanent motor function loss.
Today...we have a new option. Multiple Subpial Transection (MST).
Essentially it's the slicing of his brain to interrupt the seizures ability to spread. With the goal of preserving the function.
I was hoping...SO hoping...that his motor cortex was not involved. And my heart is broken. Even though we have this nifty new option.
It's hard to really convey to anyone outside of this world. This specific world. Because on the surface it sounds selfish. Because Trevor is high functioning in many ways. But many of those high functioning ways are tied to his motor function. That's his thing. His normal thing. He can run...and clap...and walk...
And I hate taking that from him. I hate losing it. Even if they say it's only temporary.
::sigh::
But I hate these bloody seizures more. And the life they are stealing from my son.
So tomorrow the monster dies. Hopefully forever...
19 comments:
I know how you feel. We were hoping against hope that her motor strip would not be involved even though they anticipated it would be. When they came to us after surgery and told us about the "aggressive" MST they had done, my heart sank. Julia was fully functional physically prior to surgery and I hate that she is not back up to speed yet. But honestly? It's not as bad as I feared. She's getting their quickly and after just two days of PT and OT she's already doing so much better.
Hoping tomorrow passes quickly. Thinking of you guys constantly.
Whenever you call it the seizure monster I picture this giant, ugly dragon in Trevor's brain and the surgeon as a knight in shining armor with his magical sword to slay the foul beast.
Kill the beast! Save the Trevy in distress!
I think I read too many fantasy and sci-fi novels.
We will be thinking of you all morning. Much love and prayers!!!!
I'm sorry there is so much involved on that side, but am thankful they can do the MST instead of having to remove the motor cortex.
I am so glad the day is finally here. Big prayers coming your way!
Danielle, I am so sorry it wasn't the news you were hoping for. That is sooo tough. Lots and lots of faith and trust right now. I am praying so hard for your precious boy.
Marcia
Jen and I have just been sitting here talking about you and Trevor and Jonathan and the whole situation. Gut-punched. That's all we can imagine about how you feel tonight. But I am hoping, really hoping, for the best.
We all send our bestest, bestest thoughts.
Danielle - I just want you to know that I am thinking of Trevy and the rest of your family non-stop...like I'm sure the rest of your worldwide IS family is as well. I feel like I know and love Trevy and wish I could be there to give you a big hug right now. I know tomorrow's going to be really stressful for you, so please use us, your cyberfamily, and vent or whatever you need to do. We love you and are praying for a speedy and SUCCESSFUL recovery!!!!! Big, big, big hugs.
Kari
I would like to say I am armed and ready. But both would be at least a little overstated.
The miracle nightmare has already started. I hope you can stay on the miracle side as much as you can.
I suspect it is not possible to not have expectations, some not even verbalized. But perhaps verbailizing expectations would help. Even if you do not share them with everyone who reads here.
Praying for your family (armed and ready). Barbara
praying for you and your family and all involved in Trevy's care!
What a beautiful little boy Trevor is! Please know that he is in many people's prayers.
Oh, that is a hard thing to hear. But the brain is an amazing thing and Trevy will be able to run and jump again. He might have to start over and learn it all again, but he will do it, and he will do it with his adorable smile and his beautiful eyes and he will be so happy that there are no more seizures clouding his way. Our Trevor started over at age 6 1/2 and he is a sports loving, gold medal winning, competitive boy now.
Thinking of you lots!!!!!!!!!!!
sheila
Stinking policies...how about putting too cribs together and hopping on board :) I know, probably won't work, but I just wish you could cuddle with your little guy.
Wow, seems like there is always the unexpected and things unfolding a few more times that what you would like....I'm sorry. Praying that the seizure monster is destroyed once and for all and Trevy's brain is free to go farther than ever imagined.
Sending love, prayer, and gigando hugs,
Jody
So sorry to hear that but I am hoping and praying for the best outcome for Trevor. Julia just had the MST procedure and it sounds like she is recovering remarkably well. So many hearts, thoughts and prayers will be with you and your family, you will never know.
And about the bed...well, I don't really want to make light of a bad situation...BUT...if I could draw a cartoon here it would be this: Danielle pushing a large package on wheels through the ward, at mach speed, the package wrapped in plain brown paper, with a big homemade handle fashioned on top. "Excuse me, pardon me, I've got a present for my son. Step aside, please." And on the side would be one of two things written: "International House" or "Rent-A-Center" or maybe even just the hospital's name.
Thank you for the posts and pictures. They mean so much to us because Trevor and all his family mean so much. We are there in spirit.
CB
Danielle,
You are so right that those of us outside dont know what you are going through and the heart break we feel for you is so small compared to what they all feel for you because for some of them its reliving memories that they have already experienced and for some it is what they are waiting to find out. All i know to do is to pray for you and for them. I pray God will give you strength and He will give all your IS family the words to say to you that will comfort you and Jonathan.
Praying so much for tomorrow and that the monster is dead forever.
Love you bunches!
Connie
Oh Danielle....I'm so so sorry that the news wasn't better...so heartbreaking....you and Jonathon must feel shattered right now. Thankfully you have each other and Trevy has these amazing parents who fight for him.
With the MST...what kind of therapy/timeline will Trevy be under in regards to rebuilding motor function?
We will continue to hold Trevy in our hearts as he battles through this and says "Get Lost!" to the seizures forever....and here's hoping the powers that be give in and the big bed appears...after all there are bed rails and 24 hr supervision as well as the benefits of feeling his parents hold him...I'm singin' to the choir here, aren't I?!?
Many hugs,
Margo
Oh God I was there too but because it was single stage we had no idea until after the surgery how much they were going to take. And all we had was walking and I did not want to lose that. We have so much more now. Let tomorrow be the end of the seizure monster. And the start of a whole new development curve.
Words fail me right now...because there really are none. I know that there is not a single thing that I could say to make you feel better, but for whatever it's worth; nothing about what you are going through, or what you wish for, makes you selfish. You are a mother with unending love for your beautiful son. Of course you want the best life for him! I know, it's easy for me to say. My son is high functioning and he's not laying on a surgery table right now, but that much I do know.
Love and hugs and prayers to you and your sweet boy. God will be in that operating room tomorrow, watching over Trevy.
Love Karen
So sorry to hear about the motor cortex--I cant' imagine how hard it must be to hear that. All I can say is good luck to you as you go off to slay the beast.
Praying for Trevor and your family. Praying for his medical team that they are given the wisdom and knowledge to do His will. Hang on to hope. I am amazed at these kids and how fast they recover. Trevor will amaze you. I hope you find peace in your faith tomorrow.
Oh, sweetie...
I'm sorry.
I'm stumped on words because I have no idea how you must feel.
Wanting the best case scenario for Trevor could never make you selfish. He's your precious, fighting boy. He's been faced with far more than any child should ever endure -so yeah, this news sucks because it only adds another obstacle to the battle. But, what an easier battle it will be for him to fight without the constant roar of the monster.
Love and hugs and many prayers to all of you!
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