After yesterday's long series of challenges, today was actually blissfully uneventful. I woke up reasonably early, while Sara and Ben were still asleep in the next hotel room over, and went out to get some breakfast and evaluate the road conditions. Things looked substantially better than the night before. Even though it was still below freezing, the combination of direct sunlight and moving traffic had already melted most of the ice from the lanes of travel on the main highway. By 11am when everyone was up and ready for travel, you could hardly tell the roads had been treacherous the night before. There were still a few small ice patches, particularly on the bridges, but for the most part the roads were clear and traffic was flowing normally.
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.