Ben had his wisdom teeth out yesterday morning. Short version: it went well and he's doing fine. Long version: Having even a common, simple procedure done with an adult autistic is never easy. It was kind of a stressful day....
His dentist first told us Ben needed to have his wisdom teeth out all the way back in May. It wasn't a rush, they were coming in straight with no impaction, but he made it clear that it would be much easier to deal with now than if we waited until it was actually a problem. In retrospect I can see exactly what he meant - I can't imagine dealing with all of this if Ben had also been in constant pain.
It quite literally took months to get Ben in to see the specialist and to get the procedure scheduled. Normally the extraction of wisdom teeth is a fairly straightforward office visit, but because of the autism Ben needed to have it done in a hospital setting under general anesthesia. After much wrangling, the procedure was finally set up to happen this past August. We arrived at the hospital at the appointed time, and were sitting in the surgical waiting area when a nurse came out to inform us that the doctor had to cancel due to illness. I gather he really was very ill, he wound up in the hospital himself, so I can't really blame him. But it certainly was frustrating.
It took another three months to get the procedure rescheduled, and finally yesterday was the day. Which is where I need to talk about being a strong advocate for your disabled (adult) child. Over the years Ben has unfortunately undergone more surgical procedures than I care to think about. We know exactly how he reacts to the process, and exactly how he handles going under general anesthesia. In this case we had discussed with the doctor well in advance that when the time came, Ben's mom would need to go back with him to the operating room and be with him until he was out. This has nothing to do with mistrust or insecurity, and everything to do with the fact that Ben fights anesthesia vigourously. He does not understand what is happening, and particlarly after the major surgery back in January he is afraid that when he wakes up he will have had his body cut open again and be filled with tubes and wires. Having his mom with him holding his hand and comforting him allows him to relax and trust that everything is going to be alright. This is a non-negotiable part of the process. It is as much for the medical professionals in the operating room as it is for Ben, because if he panics and gets violent there is a very real chance for people to get hurt.
So we discussed this with his doctor, and he agreed. We discussed this with the hospital person during Ben's pre-surgical appointment the day before the surgery. We brought it up again yesterday morning during Ben's admission, and discussed it with the anesthesiologist an hour prior to the procedure. We did everything we could to be clear about it with everyone, while still being respectful of the various health professionals involved. We thought we had it covered.
And then, at the last possible moment, it wasn't.
The time came for the pre-op nurses to prep him to take him back, and Ben's mom asked where she should go to put on the scrubs so she could go back with him. The nurse's rather curt reply was, "Oh, no, we don't do that here." When we both insisted, and pointed out that both the doctor and the anesthesiologist had already agreed, then the nurses acted put out that they had already begun the process and charted times, and now somehow we were screwing up their schedule. To which my general response was, gee that's a shame. They hustled Ben's mom off to another room to change into scrubs, and then they wheeled Ben away where I couldn't follow.
By the time Ben's mom was changed and brought into the operating room, they had arleady transferred Ben onto the table and he was panicking. He was struggling, and trying vigorously to pull out his IV and other wires. Ben's mom immediately took his hand and calmed him down, and he relaxed right away. In a matter of minutes he was relaxed and the anesthesiologist was able to put him under, at which point the doctor thanked Ben's mom for being there to help. The doctor was annoyed that the nurses had prevented mom from being there all along, and assured her that he was going to have a word with the hospital staff about it.
You wold think that would have resolved the issue, but it reared up again on the other side of the operation. We had been equally clear that we needed to be there in the recovery room before Ben woke up so that he wouldn't panic, but again we were prevented from doing so because "we don't do that here".
"Well," came our reply, "I guess we'll know he's awake when we here the screaming and you come running to find us.."
Seriously... I am not a doctor. I would never presume to argue with a doctor or nurse about an actual medical issue. But I do have two decades of experience dealing with this particular patient, who is a fully grown adult male with all the strength that implies. I do expect health professionals to listen when we tell them what our experience is, and I expect to be reasonably accommodated on those points.
So yeah, Ben woke up in the recovery room witout us and he panicked. We were brought back quickly, and were able to calm him down in short order. Which could have been easily avoided by listening to us in the first place.
Yesterday was our first, and in all liklihood last, experience at that particular hospital. If you are in Central Florida and want to take your autistic child someplace that will actually listen to you and work with you, go to Arnold Palmer -- they are spectacular. Everywhere else we have been has paled in comparison.
So anyway, Ben recovered like a champ. He was released from the hospital within 90 minutes after the surgery was over, and so far he is doing remarkably well. He actualy stayed awake all day, which was surprising. He spent some time looking in the mirror, trying to see what was happening in his mouth. He poked at the area with his tongue, but otherwise has left it alone. All signs are that everything is healing nicely, and by the weekend he should be totally fine. He's a champ!