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.
It's been a couple of weeks, so I thought I should post an update on Ben's health. But before I get to that, I'd rather start with some happy stuff. This past weekend Ben and I made it into the Magic Kingdom for a couple hours. He was very excited to be going, and he seemed to enjoy the fresh air and sunshine, but his stamina only held up for about two hours before he had to leave. While we were there, though, we did try out the new DAS system that has replaced the old GAC cards (more on our experience with that tomorrow), and Ben got to visit with Snow White for the first time at the new Princess Fairytale Hall. For a few minutes, at least, I got to see Ben happy and excited.
Ben meets Snow White for the first time at the new Princess Fairytale Hall
First of all, I apologize for not posting anything here sooner. As you can imagine, this has been a fairly trying fall. Thank you to everyone who has expressed both concern and good wishes regarding Benjamin's health.
Since Ben was released from the hospital last month following his ERCP, he has only made it to school on three days. One of those days, he was sent home early because the teacher thought he looked like he was possibly going to throw up. The other two days went moderately well. That being said, Ben has been sleeping more than usual and he has continued to have a very poor appetite. Because he is essentially non-verbal, it is difficult to assess whether he is in pain. He has burst of energy and good mood, but then he inevitably crashes. He sometimes has entire days where he outwardly seems perfectly fine, aside from the diminished appetite. Yet at the same time, if he goes for too long without getting some kind of pain medication, he crashes hard.
It has been two weeks since my last update, and I do appreciate everyone's patience in waiting to hear the latest news. To catch up since my last blog post: Ben wound up spending three additional days at Arnold Palmer hospital before finally being released on Monday, September 9th. He was not released because he was all better, he was released because he was eating and drinking enough to no longer require IV fluids, and his pain levels had been reduced to a level that could hopefully be managed at home with his mom. The simple truth is that, depending on your definition, "all better" either won't happen until probably January or else never at all. He still has a very large stone blocking his pancreatic duct, although the small stent has allowed his pancreatic fluids to drain. He will require at least two more endoscopic procedures in order to get that particular stone out, and then he has multiple other stones more deeply embedded in his pancreas which cannot even be reached until the big one is out. Ultimately, it is very likely that he will need to have major abdominal surgery to have his pancreas removed, we just don't know how far into the future that eventuality will occur.
When Ben was released from Florida Hospital on Thursday morning, we had a very low degree of confidence that he was actually better. We mostly accepted the hospital discharge so that we could get the heck out of Florida Hospital, and bring him back to Arnold Palmer if necessary. Before we even left the hospital I had already made an appointment for Ben to see the Nurse Practitioner at his regular GI doc's office the next day. I really hoped that we were just tired and pessimistic, and that by Friday Ben would be feeling awesome after a good night's sleep in his own bed.
Obviously, I was not being pessimistic.
1. The pancreas does not have Eyelets. It has Islets (of Langerhans)
2. When a nurse says, "I just spoke to the doctor on the phone, and he is on his way up right now", that means the doctor will be there in about two hours.
3. When someone comes into your son's hospital room and introduces herself as both a Doctor and a Nurse (I kid you not, her business card shows her name as Dr. <whatever>, ARNP), and also hands you a fake baseball card with information about her, you can safely ignore everything she says and just smile and nod until she leaves the room.
4. If your sister mentions on Facebook that she is baking cookies, and you respond favorably, and you have an awesome wife, you might just come home to find a plate of cookies on your desk.
5. Ben has multiple stones in his pancreas, and the reason the doctor could not remove the other ones is because the one big one is blocking the entire main pancreatic duct and so he can't reach the others. It will take 2-4 more surgeries, one every six weeks or so, in order to break down the big stone and then remove all of the others.
6. When multiple doctors and nurses tell you your son is definitely being released from the hospital today, don't believe them until they actually hand you the discharge paperwork.
There are so many people who want an update on Ben, so I am putting the details down here in one spot. It's not the happy resolution we were looking for.
This afternoon Ben had his ERCP, as well as an Endoscopic Ultrasound, in order to take a closer look at what is going on in his pancreas. What we expected was basically a repeat of seven years ago, with the removal of some stones and the placement of a stent. At about 1:30 this afternoon Ben was taken back into surgery and we were told it should take around 45 minutes. About two hours later he was finally out of surgery.
I don't have the energy or the attention span Write Pretty Words about this, but I figure I should summarize the current situation so that I can point people here for more info.
This past Monday morning at 4am Benjamin started throwing up. This continued all day, and after twelve hours with no improvement we took him to the Emergency Room. He was evaluated, the doctors verified that he did not have Appendicitis or Pancreatitis, his gallbladder was fine, and according to the ER doc his abdominal X-ray was "normal". They sent us home at midnight with instructions to follow up with Ben's regular GI doctor the next day.
A few weeks a go I got an interview request from Herb Leibacher at WorldOfWalt.com, and the resulting conversation is now up at http://www.worldofwalt.com/author-interview-disneys-impact-autism.html
"...this is a very human story. And it is story that one can more easily pitch to non-Disney fans for the human interest story. But you may want to grab a tissue as you reach the end of the book!"
Complete review at BetweenDisney.com.