User:Woozle/blog/2010/04/22/2127 Mighty Are the Teeth of Josh

Mighty Are the Teeth of Josh 2010-04-22 2127

Josh has never been to a dentist because he wouldn't "open wide" on command, much less sit calmly for minutes at a time while someone mucked about inside his mouth. It has always seemed pretty clear that he would need a general anaesthetic -- so as long as there was no clear need for dental attention, we put that fairly far down the list of Josh Priorities.

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Then last year, he started making these clicking noises with his jaw, and otherwise doing things which could easily be read as indicators of dental pain. Sandy was pretty sure it wasn't actually tooth pain, but stress -- he had made similar sounds over a year earlier, and tooth pain doesn't just go away for months at a time.

There was enough worry, however, that we finally started making inquiries in October about getting him an appointment at the UNC Dental Clinic to find out what they could do.

Much paperwork and many dropped balls later, in approximately February, Josh's caregiver at the foster home became convinced that Josh's teeth were rotten and he was crying out from the pain. She even sent us an email on a Friday when he was coming home with us after school, to warn us about this... but when he got here, he was fine, and continued to be fine all weekend.

(That should perhaps have been A Clue that Josh was not Entirely Happy with the foster home.)

Nevertheless, we decided it would be best to escalate the dental appointment and push it through. With some help from Josh's case manager, contacts were made and an initial appointment finally happened -- and as expected, Josh wouldn't open his mouth for even a brief dental survey.

So we started the paperwork to get him registered as a patient at UNC Hospital, which would handle the anaesthesia, and get him set up for an operation date. (From this point forward, we were no longer dealing with the Dental Clinic but with UNC Geriatrics and Special Care.)

We took him in this past Monday for a "pre-care" appointment where they get him into their computer system, take some vitals, and briefly discuss the real operation -- which was scheduled for what is now known as "today".

What happened today:

Here's the itinerary I wrote down last night:

• 4:45 a.m. Start prodding Josh to get up (offer clothes & try to dress him, but don't fight a losing battle)
• If no-go with the dressing, take everything out to the car (including his clothes), then
• Take Josh out to car.
• 5:00 a.m. If no luck getting Josh into car by this time, call the Emergency Grandma Service (he will always go places with her -- so far, anyway...)

Fortunately, we did not have to invoke the Emergency Grandma. He did refuse to get dressed, continued to refuse when we got to UNC, and fought very hard against getting out of the car.

Fortunately, we arrived way early (even after driving around a bit to kill some time) -- 5:30 or so, I think -- so I took my time working out how to get him out of the car. It eventually came down to a combination of lowering the back of the seat he was in (so he couldn't push against it to wedge his feet under the passenger-side dashboard) and lowering the window (so he couldn't put his foot against it to keep from being pulled further out).

He still wouldn't put any of his clothes on after being dragged out of the car -- not even shoes or a jacket.

That wasn't the fun part, however.

He walked in more or less peacefully. There was a brief moment of alarm when we noted that the main entrance was closed that early in the morning, but all we had to do was walk down a little bit to the "Children's Hospital Entrance" and then backtrack inside the building. Josh got to ride the escalator in his bare feet.

We got to the registration desk (pretty much the only thing open at that hour), and after only about 5 minutes they invited us to come back into the office area where you sit down and they type lots of stuff in.

At that point, Josh pulled his first (and only) escape. The office was essentially divided into a "behind the desk" area and a "customer" area, with two openings -- making a small island of cubicles which Josh could run around, always having an avenue to get away from me no matter which way I came. I had to pull Sandy off talking to the clerk to get her to block one of the routes so I could corner him (after some lady said "excuse me sir, you can't come back here" -- which was after I had already asked the front desk guy if I should go in after Josh or not, and he had said go ahead... she might have been talking to Josh or to me; it's not clear).

They suggested that I take Josh back out to the waiting room, so I did.

What was great about the Registration waiting room was that it was right next to the Pre-Care waiting room, which had a nice island in the middle for Josh to orbit and was TOTALLY EMPTY (and most of the exits locked), so Josh could freely orbit around and explore without bothering anybody...

...except that that was when the security guards suddenly showed up in force. (This is the fun part.) I'm guessing they saw this half-naked adult-looking person wandering around in an area where nobody should be, and decided that this was Not Okay. There were maybe half a dozen of them. They said he needed to get dressed. I explained that Josh was autistic and nonverbal. They said that they understood that but he still needed to get dressed. I explained that I could certainly try, but that he was strong and I couldn't physically force him to get dressed if he didn't want to.

I went to get his pants, saw that I didn't have them, came back, explained to them that his pants were with his mother who was in the computer area, which was locked. They somehow made the necessary connections to get her out with the pants, which I then tried to put on -- with completely predictable results, i.e. he was having none of it.

Although the security guards tried a little of the old authoritarian "put you clothes on now" stuff, at least they realized it was a losing battle and didn't push it. They obtained a hospital gown, and we were able to get that on him at least, which apparently was good enough.

Eventually it emerged that we could advance to the next stage of the game -- a few minutes later an orderly arrived with a wheelchair to escort us. I was afraid Josh would refuse to get in, but he didn't -- and pretty quickly it became clear that he really liked the wheelchair. So that was good.

We rode up to the 4th floor accompanied by about 4 security guards and were eventually wheeled into a waiting room where they took Josh's vitals yet again (he seems to have gotten used to this) and then we.......

.....waited.

Josh sat in the hospital bed/gurney, which was configured like a chair. When he started to slump (having not had his full sleep cycle), we turned off the lights and figured out how to make it more flat like a bed.

He slept pretty continuously from when we arrived in that room around 6:30 until about 7:15, when the operating team showed up. We spent a few minutes discussing plans for getting a sedative in him, and a lot of minutes waiting for them to prepare the oral dose -- which of course he refused.

Then we sat around waiting some more, with Josh growing increasingly restless. At one point, Josh saw another patient being wheeled off, and immediately got back onto the gurney -- and figured out how to get it back into the "chair" configuration the other patient's gurney was in. Fortunately, the operating team finally returned not long after that -- I think it was 7:45 or maybe 8:00 -- and decided to just wheel him into the operating room and inject him with the sedative. We thought at first they would need us, but no -- we weren't allowed back there (at this point, anyway).

So they wheeled him off, and we waited.

A few minutes later, the orderly came back and said that they had managed to get the needle in him with no problem, and we could now go back to the main surgical waiting room.

So we did that, and settled in for the long haul.

I don't remember times much after that, but it was probably about an hour later when the dental surgeon came in and said that his teeth were basically fine -- "he has beautiful teeth!" -- but that his wisdom teeth had come in and were impacted, so they needed to be pulled.

Aside: It needs to be understood at this point that a certain group of people in the social service sector had been hinting broadly that Harena was an irresponsible mother for never having taken her kids to the dentist before. We have now had all three of them taken, and none had any cavities. Yes, we would like to have been taking them regularly all along, but what with the work involved in getting Josh services -- and not really being able to afford it until we got SCHIP for them last year -- plus Harena needing her own rather urgent and extensive dental work, it just hadn't happened. If we had had reason to believe it was urgent, we certainly would have done so -- but it has now been proven pretty conclusively that we were right not to spazz about it. (Here endeth the Aside.)

About another hour later, we loaded a very dizzy and uncoordinated Josh into the car -- he was having such a hard time that I was afraid he was going to miscalculate and hurt himself, but he never did -- and drove home.

On the way home, Josh (who was otherwise mostly dozing, with his head leaned over to one side) twice put his hand gently on my arm. It's really difficult to tell if it was the affectionate gesture that it seemed, or something more incidental.

He slept, on and off, for most of the afternoon. The holes where his wisdom teeth had been apparently stopped bleeding an hour or two after we got home. Right now he's walking around looking almost normal -- a bit chipmunk-cheeked, but not stumbling or anything.

We're probably not going to try to get him to school tomorrow; he should have some time to recover.

We're going to keep him here for maybe a week or so before we try to move him up to The Hughes Center, just so he can recover mentally from the mad pace of events this past week. (We do need to get him up there by the 30th, though, or certain paperwork will expire and we'll need to do more legwork.)

Sandy's Addenda Post

Slight correction/addedums:

Josh din't seem to me to be actually sleeping whilst we were waiting; more like a kind of a bored dozing sort of thing.

It was an aide/person/thing who initially came & showed us that we could adjust the chair/gurney/bed thingy; she was the one who said we could turn off the lights & did so.

Also, it was sudden activity in the room across from us that got Josh up & impatient just before 7:30; and it was about then that our across the hall neighbor got wheeled off and Josh was all, "oooooh, i wanna dooo thaaaat"...

Aaaaand his "team" after trying to get oral sedatives into him with no luck saw that he was ready & willing to be wheeled off as well, and did so.

(and anyone pondering the logistics of such things, we had arranged with the grandparents to have B&Z taken to school and they were absolutely fantastic at getting ready all by themselves)

Oh and something that W was not there for initially was when they took me back to be with Josh when he was waking up from the anesthesia... it was actually quite an emotionally wrenching thing for me... he seemed so.. fragile and delicate... slowly surfacing from that muck. So very vulnerable and i nearly cried as i sang his traditional praise song to him, "You're So Strong, You're So Smart; Josh was born with a Loving Heart" *sniffles even now when writing this*

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i also want to mention that everyone at Memorial Hospital (yes, even the security guards one of whom even cracked a momentary grin and said "no problem" when apologized to for the trouble) were Wonderfully Nice and patient and Mostly Cheerful. i can't praise them enough for their care of Josh whilst he was there.

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So, woo, quite a day: from 4am-ish to 9:30pm-ish... am i exhausted still this morning? Why yes. Yes i am

Historical Notes

This was originally posted to LiveJournal on the day it all happened; Sandy's corrections and additions were posted follow-up here the next day. I'm cross-posting this here (backdated) so it can be more easily found along with the other Josh blog posts.