Skip to main content

it's not really about today

That's what I told them yesterday when I had a sobbing snotty meltdown as the team gassed him to sleep. That was just for the IV placement. And thank God I'm a crazy demanding mommy...cause that IV was a HUGE benefit this morning. We were able to keep it in all night!



But back to yesterday.



I have been told that I have knack for enhancing ordinary life...and creating a drama. Maybe I do? Although somehow I think radical brain surgery sounds dramatic all on it's own. But yesterday was just AWFUL. Stressful. Looooooong.



The Sedation Team had to use the maximum amount of medications to get him to sleep. We were all stressed out when 45 minutes later Trevor was still a screaming hair ripping out maniac.



Sweet lil' smokies finally...he was out. And they captured the MRI. We were called back in to see our baby.



Who...loaded up as many IV sleep meds as legally possible...now wouldn't wake up. Which sent us up to the Observation Unit. A bay of beds separated by curtains. Very cozy. Ha. About four hours of sleep in the thought actually crossed my mind...



What if he doesn't wake up? What if I just said good-bye to my baby and didn't even know it?



And for those rolling their eyes and my drama-ness. Jonathan had the same thought.



Which is why we were a joyful blubbering mess when he finally came around. And drank some juice. So we could go back and enjoy our beautiful King sized room!



Which we did. Trevy slept like a champ between us. Jonathan and I are well rested today too.



We're in the Surgical Waiting room. Because after yesterday's drama they had the General Anesthesia Team work with Trevy. He's having his PET scan right now.



This round of sleeping went SO much more smoothly. SO much so. And now we wait.



Dr. Neuro-Surgeon will meet with us later today. I'll update as I can.

Comments

Holli said…
Definitely not unnecessary drama there. Absolutely justified drama! That would have made me nuts too. Reading that took me back to our visit...watching them load Austin up with the minimum amount, then a little more, then his silly sleepy giggle, followed by a burst of energy, then a little more sleep med. Until watching him drift off with the maximum amount. There's nothing settling about watching your baby go to sleep unnaturally. Especially with the surgery set to begin tomorrow.

Lots of thoughts and prayers for you, Jonathan, and the little Trevy.
Colby said…
Bless his heart...Bless EVERYONE'S heart!!! I am SO sorry that had to happen with the sedation...

Listen, THAT is my BIGGEST fear with ALL surgeries, procedures, etc....SEDATION....

I am PETRIFIED of it....

I would have been just like you!!!! Wondering IF he would wake up....

So thankful that it went better this AM....

Keep us posted, dear friend.....

We are waiting and checking and praying.....

Love y'all!!!

Cyndi
Andi said…
Emma used to have a hard time waking from sedation. Not hours, but the nurses would get impatient if she didn't wake up 10 minutes after the test. At that point, she was hard to wake up in general. Emma had to have the gas to get her IV in for her MRI and PET scan a couple of months ago. We did it for the PET scan and so I suggested it for the MRI and they jumped on it. They hate poking the kids more than twice.

Ugh! We were in the observation floor once. Long time ago, November 2007. For 2 nights. Thankfully, they put us on the end of the row of curtains. I slept in the lone chair and watched the tiny TV.

Which is interesting with the parental controls they have on. I tried to watch the CMT awards, but every once in a while it would kick on the parental control and turn off. However, I could watch one of those survival shows and saw a guy skin a rabbit. Lovely.

Sending lots of love to you guys!!
Bacon Wife said…
I am so sorry you had such a rough day yesterday. i dont know what else to say other than that. We are praying.
Thanks for updating, i had several coworkers who had been praying for the surgery and more specifically for the ear infection ask me today how he was and how you were doing.
Love you bunches!
C
JSmith5780 said…
Just texted you because you hadn't posted here on FB (as of 6:30AM). Glad today was easier. I'll be thinking of you and praying for Trevy and the doctors.
Debbie said…
I did the same thing...the teary-eyed, kiss on the forehead, as my son lay on a table with a gas mask on ready for his MRI, and all I thought about was I have to see him awake for my stomach to untie...that was a MRI...This week is SO much bigger than a MRI, I think you just have to let yourself go through all/any emotions right now. We are mom's, these are our babies, all of us mom's totally get the emotional roller coaster.
My kids and I prayed for Trev and your entire family last night, and I thought and sent prayers up first thing this morning.

Huge cyber hug...Deb
Lisa said…
That must have been so stressful! Julia also needs a ton of meds to get knocked out, she fights it so hard. Thinking of you guys constantly! My whole family is following your blog now, Trevor is such a cutie and has enchanted us all. Big hugs!
Sinead said…
I don't know why but I had a big sobbing meltdown the night of Emmas surgery when they took her down for MRI. I think it was an awake one cause it was a single shot and I wanted to go in but they wouldn't let me cause it was policy. I might have wanted to hit someone and ram their policy up their arses. I might have used choice language. I might have been very loud. I don't really remember. I know I was a bit over the top and totally dramatic and needing to control my daughters experience. And I'm usually seriously calm. Perfectly controlled. But not the week my baby had brain surgery. I get to do that once and a while. As do you. Take care of your screaming blubbering lovely self. It's not easy.
I don't think you over reacted at all!! Although I might be biased b/c I'm a big time over reactor!! But i think your fears in that moment of time were legit. We never know the what "might" happen. But the main thing is he came through ok & got some snuggle time in with his precious mom & strong dad! thanks for all of the updates!!

Popular posts from this blog

a different kind of muscle — guardianship process

  To all the parents who have walked through the guardianship process — my heart is with you. Our paperwork is prepped and ready to submit this week. He turns 18 on April 3rd. I've been thinking about this for a year now, but only just mustered the energy to move forward — the loom of his birthday my propellant. Overwhelm has paralyzing effect. I'm struggling to recall the last time I didn't feel overwhelmed. It struck me how all these years of walking through disability beside Trevor should have made me stronger and yet... I suppose it's a different kind of muscle being developed.

No, I don’t know him personally

  I’ve had several emails today asking if I know Mike W. of Marissa’s Bunny personally.    Trevy’s blog was linked on her site.  Although it’s not now.     I’ve posted here and there at his request.  Because…well…we’re a community.  Us IS families.  And Marissa is wicked cute.  Her daddy has a way with words.  Also who wouldn’t want the world to know about an iPad give-away?    But aside from that…I know about as much as you do.    We’ve never met in person.    Our only communication has been cyber.    I’m a ginormous sap and as such would love to believe that all is right.  That the sweet, beautiful families who were promised iPads will be getting them tonight.  Tomorrow at the latest.  That no one has been lied to.  That the personal thank you for your generosity email I sent him on behalf of other IS families I’ve grown to love and was thrilled to learn w...

the great answer hunt in the land of Infantile Spasms

If I've said it once... I've thought it a million times more. How it's like the more I research...and discover...about IS. The more blurry everything becomes. For every answer found. A dozen questions are unearthed. Remember our whole ARX saga ? Yeah...that threw me for a loop. So much so...that I never went on to post the end of the story. Thus far... See...the unbelievable in the world of genes happened. Because this is IS-ville after all. After Dr. Genes sampled Trevy's ARX gene on a whim...a whim which revealed an unkown (meaning the first time this specific change was found) mild mutation...she proceeded to send Toby's blood off to mad scientist central. With assurances that this was totally unnecessary . She was convinced that Trevor's ARX mutation was the underlying cause of his Infantile Spasms. And that Typical Toby...would prove to be just that. Typical...at least in all areas mutate-able. And yet...Toby's ARX blood sample revealed THE SAME MIL...