It really was a simple enough plan. Ben was scheduled for a consult with the doctor on Thursday morning in Birmingham, AL and then surgery on Friday. The drive from Orlando to Birmingham should have taken 9-10 hours with breaks along the way. I had a hearty breakfast, knowing that I would be driving all day, and then went to pick up Ben and Sara. After some wrangling to get Ben out the door we were on our way north by 10:30. Smooth sailing!
Five months ago Ben got sick. Well, he was sick before that but not visibly so; it was five months ago that he wound up in the hospital with non-stop vomiting. Since then it has been multiple hospital stays, three endoscopic procedures, and months of waiting. Today we leave for Birmingham, Alabama to see a specialist. Friday Ben will have major abdominal surgery to remove part or all of his pancreas, and to transplant the islets into his liver.
I really don't have much to write about this week, except to talk about the wait. Ben has been back to school, today is his seventh consecutive school day. After being out for so long (basically from June of 2013 until January of 2014, so effectively seven full months) he is not performing well. He is physically able to make it through the day, but he steadfastly refuses to do any work. Some of that may be him being physically uncomfortable and worn out from the ongoing pancreatitis. Most of it, though, is just him being smart and cunning enough to pretend not to understand what his teachers ask of him. Tasks that he could easily complete in the classroom last spring he now pretends are insurmountable puzzles. He'll play "no habla englais" in one moment, and then when he thinks nobody is looking he will be visibly satisfied with his deception. He's not a dumb kid. But he is still miserable most of the time, with only tiny reserves of energy.
I was dozing somewhere happily between sleep and wakefulness on Saturday afternoon when my wife nudged me, saying "Honey, I think you should take a look at these two holes in the wall in the guest room..."
Ladies and gentlemen, I give you the patron saint of Benjamin's current situation: Rosanne Rosannadanna
Here's a brief rundown of what has been happening with Ben in the past few weeks.
Happy 2014 to everyone. Nothing much new to report here. Ben is still very low energy, and in the last few days has acquired a rash all over his back and arms. So that's fun. If it hasn't cleared up by tomorrow then we are off to the doctor to have it looked at. He is still scheduled for surgery in Alabama on January 31st. We are counting the days.
Today is Ben's 20th birthday. I know it's cliche, but it hardly seems possible that the little baby I used to be able to hold in the crook of my arm is now two decades old.
I realized that I hadn't posted anything here since the end of November, so here is the short version:
Arranging for the surgery he needs has been a slow uphill battle. We were initially delayed by the Thanksgiving holiday, and then there was a SNAFU with the referral (it went to the surgeon's academic office instead of the clinic). Once we finally got the referral itself sorted out we had to iron out some insurance issues to do with taking him out of state for this procedure. As of today, that is all taken care of.
Hoban 'Wash' Washburn: This landing is gonna get pretty interesting.
Capt. Malcolm Reynolds: Define "interesting".
Hoban 'Wash' Washburn: [deadpan] Oh God, oh God, we're all going to die?
- from "Serenity"
Something you definitely never want to hear from a doctor, particularly a world-renowned surgeon, is "that's an interesting case." Unfortunately, that's what we heard last Friday after Ben's third (and ultimately fruitless) ERCP.
It's pretty clear that Ben would never have reached 3,500 rides on Snow White's Scary Adventures without making use of the Guest Assistance Card (GAC) program. We can debate whether or not that's a good thing, but in any case it is safe to say that my family had extensive direct experience with the GAC over the course of ten years. In this last year we had almost completely weaned Ben off of using the card, because he has reached the point as a young adult where he is perfectly capable of standing in a line (both physically and emotionally). I count that as a success in and of itself.
When Disney announced several months back that the GAC program would be phased out due to rampant abuse and replaced with a new Disability Access System (DAS), I was not particularly concerned about how it would affect our family. I had some worries about how it would affect the autism community in general, but for us at least it seemed that Ben had progressed beyond the point where he really needed it. And then, back at the end of August, Ben got sick.