She said it so flippantly.
Like I already knew.
But I didn't.
Which is why her matter of fact...
"We need to get this PET done within the next two weeks...cause the team is gathering on April 17th to review his case"
...took me completely off guard.
Utterly off guard.
I stuttered...
"wha...wha...wha...the surgical team?"
I had no idea that Trevor's case was being presented SO soon. I mean...I knew we were doing all this testing heading towards possible surgical intervention. But somehow it has always felt so far off. So dream-y. And never ever not even once did I imagine it would be done locally. I'm still getting comfortable with the idea of Boston Children's possibly cutting out the damage. Not here. I mean...just last year they opened a guy up & started cutting the WRONG side of his grey matter!
I guess I thought we were gathering all this information to present in Boston. And secretly crossing my fingers that I could find a way to get to Chugani.
And I'm feelin' a little freaked out right now...
9 comments:
D, is there any way that you can request a different doctor do the surgery? Especially if you aren't feeling all that trusting of the doctors in Boston!!
Praying all goes well and sending lots of love and hugs!
I wouldn't rule out that possibility so soon (Chugani). And, I would certainly be hesitant myself after that kind of mistake...whoa!
Have you sought advice from Chugani yet? Maybe he would be willing to review some of Trevy's tests? Or maybe you could wait and see what they say about his case and (depending) get a second opinion from Chugani?
I don't know...just my two cents...I'm definitely not experienced in this area..but I do know that their word doesn't have to be the final one..and if surgery is an option, you certainly don't have to settle for just anyone doing it.
And...it's still a very realistic notion to get to Chugani..it's not over yet!
so cute...I called Jonathan right before I posted...and the pair of you sound just like him! *smile* I know this isn't the end of the road...but it just took me by such stinkin' surprise that I was/am really overwhelmed. Suddenly the thought of surgery becoming either real...or dead in the water...is staring me in the face. And it's freakin' me out!
I have consulted with Chugani...although not since Sept. At that time he told me that he would definately review Trevor's case...but we needed to trial ACTH & Vigabatrin first. I'm going to email him today or tomorrow to get an updated idea of where we're at with him.
But I'll be honest...it feels a bit unrealistic to go to Detroit. Not only am I fairly convinced that our insurance will thumb their noses...but I also have two other children to think about...and a very sick father in law who may need my hubby at a moments notice. It's all feeling very surreal...and overwhemling...and AAAAAAAAAAAAAAH!
Anyway...
...danielle
Well Adesta and Holli said everything I would say. The opinion of the RI surgical team, either yes or no, is definitely not the end. Another team may say the exact opposite. That is why you get a second, third or fourth opinion.
How is your FIL?? In Houston? Any answers yet? Tell Jonathan we are thinking of his family and wishing for the best.
Well that is kinda scary!! Have you talked to Chugani? We see Chugani all the time (we're only 20 minutes away). If you're ever coming here to see him and you need someplace to stay....give me a shout, I'm friendly and we have extra beds!
And I'm sure the boys would have fun.
All other issues aside with getting to detroit (which I realize are huge) the insurance might not be your biggest battle. KC is on Illinois medicaid but after a lot of paperwork they fully covered KC's PET scan and visit with Chugani. If KC ends up needing surgery we will be able to go back to him.
I can completely understand why you would be so freaked out right now. This is huge! But maybe it will be Trevy's miracle. He's got one out there somewhere, I just know it! You and your family are in my prayers, as always.
Love Karen
OMG! Surgery? It does seem like it was sudden, even though I know it's always a possibility with IS. I hope that everything works out and you find a good team.
wow, so much on ur plate sweets! thinking of u & praying 4 u guys as always!!!
xoxox,
sharon
Oh my goodness...so much to take in and consider.
My heart goes out to you.
May you find strength, peace and the best answers for Trevy.
Hugs,
M
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