It is Sunday. That means, my friends, that we made it through Thursday, Friday and Saturday. Perhaps you’ve been wondering how it all went with J and his Big Dental Appointment. Perhaps you’d completely put it out of your mind and are only now being reminded of it…either way, you’re getting a recap.
At around 2:oo P.M. on Thursday the hospital called to announce they wanted to talk to J. I explained J doesn’t talk. The employee on the other side of the line said she needed to talk to him. I politely (and patiently) explained that we are J’s guardians and that he doesn’t speak. She insisted. This was not going well, was it? I said to her, again very patiently, that we had submitted the paperwork for J’s guardianship and that I was the responsible party that needed to make arrangements for his appointment. I guess I wore her out because she simply said “well, bring the medical power of attorney” (to which I interjected “which we don’t need because it is included in the court-appointed guardianship”) and “he needs to be here by eleven a.m.” Stunned as I was that we had to keep him engaged, entertained, unfed and thirsty for that long, I still wrote down all the instructions she curtly and less-than-nicely gave me. My heart sank. J had to go hungry and thirsty until nearly noon on Friday. Talk about juggling…
I informed Dada of our schedule for Friday and, apprehensively, took J for a long walk so I could explain what the gist of the next day would be. Did I trigger anxiety in this way? Yes, I did…J immediately got a little obsessive about things, and clingy as we all know he can be. If Friday was going to be a long day, Thursday wasn’t feeling much shorter. The impromptu arrival of the ice cream truck shortly before sunset brought a much needed respite to our stress. J happily tucked into a cup of ice cream and then followed us around the house until it was time for his bath which, he knows, precedes bedtime.
We kept J awake for as long as we could, giving him his bath at ten P.M. and tucking him in shortly after eleven. Fingers and toes crossed, we crawled into bed. Our hopes that he would sleep until at least seven-thirty were dashed when he appeared in our room at 6:15 loudly announcing that it was time for coffee…
GOOD MORNING! COFFEE!!! GOOD MORNING! GOOD MORNING! COFFEE!!! GOOD MORNING! We tried to fake-snore our way out of this bind…it didn’t work. Having decided to pull a Lech Walesa and not have coffee or water until J was in the OR, we slowly worked our way out of bed, suggested that he fill his snack box (an aspirational snack box, we called it, so that he would know he couldn’t eat any of it until the doctor gave the OK) and out the door we went.
Because we moved as if through Jell-O, it was nearly 8 a.m. when we left the house, decaffeinated, without any of the benefits of J’s med and anxious. We had determined that even if we had to drive up to Pittsburgh and immediately turn around to distract J from food, drink and impending doom we would. J, however, had other ideas. GO FOR A WALK! We looked at each other…that means the river. Down to the river we drove, feeding coins into the parking meter and trying to make it seem like we really needed thirty minutes worth of parking (this usually takes fifteen minutes.) J walked down both piers and back, and then accepted an invitation to walk further down the path (to a place he usually refuses to visit) where there are exercise machines set up. All that cooperation was heart-warming, yes, but also a little creepy…when J is willing to help, it usually means something else will have to give.
By the time J was done using the bench press, the air walker, and assorted other pieces of equipment, we discovered we’d eaten up 52 minutes and owed money to the angrily-blinking parking meter. The dreaded request for food was issued as soon as we climbed into the car. A quick glance was exchanged and Part 2 of the plan was put into effect: we’re going to the store!!!! Never have we walked so slowly through Target. Another 45 minutes were burned this way, and J was happy because he found a little speaker he can attach to his iPad so he can make himself heard with the Proloquo.
And then we got to the hospital. Resistance, of which we got what I’d define as a rather loud token amount, was futile. In for a penny, in for all 200-plus pounds. J allowed the registration clerk to tag him (and us) with minimal fuss before we headed to the same-day surgery ward on the second floor. We looked for his number on the board (our claim ticket???) and saw he would soon be called to pre-op. We didn’t even get to sit down because they must’ve been instructed to simply dive into the proceedings and not make a fuss.
Wailing just enough for his resistance to be a matter of record, J was led to a small prep area where he had to put on a gown (which he didn’t enjoy AT ALL, and demanded that his hats be left on him…we acquiesced) and the long wait for the actual rumble began. Equipped with his Proloquo, J managed to be quite a cooperative patient. We were, to say the least, impressed beyond words. J announced every piece of medical equipment that was being used on him: BLOOD PRESSURE CUFF, STETHOSCOPE… J echoed every single thing that was done to him: CHECK YOUR PULSE, CHECK YOUR BLOOD PRESSURE. He told people who they were: NURSE, DOCTOR. He told us he was HAPPY (we KNEW he was being hyperbolic) and that he was FINISHED. We explained that no, he was not finished, but that soon they’d be cleaning his teeth and then we’d go home. He tried to negotiate his way out of the pre-op area: I WANT TO DO THE DISHES; I WANT TO USE THE VACUUM CLEANER; I WANT TO TAKE OUT THE TRASH; I AM TAKING THE RECYCLING TO THE GARAGE; I WANT TO GO TO THE STORE. He informed every nurse who walked in that he wanted NOODLES AND CHEESE, PLEASE; that he NEEDED TO BUY MORE CHEESE; that he wanted A COKE, PLEASE. They all were charmed by his ability to express his desire to leave without destroying hospital property or harming humans. They all wanted to hire him to help at home with chores. He was voted all-around best patient EVER by all the nurses.
When the time came to put in his I V, J announced what was being done with his Proloquo, and the nurses were impressed that this was not accompanied with resistance or wailing of any sort. I have to confess that we were impressed, relieved and in sore need of coffee. It was nearly one P.M. when they rolled him away into the ER with me as his escort; him weaving slightly under the effects of a sedative. I’ve seen wildlife in nature shows go down more quickly than J did when shot with tranquilizer darts. The kid was slurring his speech (HEWWO, GOOWH MOWHNIGH, GOOWH EWENIGH,) but he wasn’t going to lay flat until he had no other alternative. I stopped where it said DO NOT GO PAST THIS POINT, and he waved at me vaguely.
Dada and I had the worst cup of coffee in the history of cups of coffee as we sat staring at the Arrivals and Departures board in the waiting area. J’s number was highlighted in green, announcing he was in the OR. TGG texted us several times to see how things were going; we’d seen him in the lobby when he was returning from taking a patient to her car. When he saw us, he waved enthusiastically, asked how long J’s stint in the OR was meant to last and cringed when we said it could be up to three hours. He went back to work as we went to the waiting area, and texted us “how’s your La Merde Blend?” A little levity in the middle of our worry, and very welcome at that.
J’s procedure actually lasted 90 minutes and no major work had to be done. The dentist (who looked like Captain Picard under his surgical mask)announced J’s teeth are “GOOD!” Three fillings, he said, and he will have his wisdom teeth removed a couple of years from now. He could eat normally as soon as he was awake and shaken off the primary effects of the anesthesia. J woke up slowly, with a bit of a bloody nose, and asking for a cold Coke. The nurses, who obviously were in awe of him, acquiesced and coddled him more than I did. He sucked down his Coke with great enthusiasm, announced he was done and asked to go home to eat NOODLES AND CHEESE.
He recovered better than we did. All the stress of the day, compounded with a much needed bowl of Pad Thai and a tall glass of mineral water with a wedge of lemon, drove Dada and I to relax in bed until I was out like a light and he managed to read for a few hours until it was time to call it a night. J made up for lost time and worked his way through his snacks. Aside from a slightly scratchy throat (from the NG tube) and a bit of a bloody nose, he is none the worse for wear. Yesterday morning he asked to go to Farmers’ Market, and today he is asking for hammer and nails.
The worst part of summer is over. Furthermore, we have come to realize that, yes, it IS time to start reducing J’s med. He is ready. We are ready. He can now “talk” his way through his worries, give names to things and make them less scary. Every single penny we spent on that iPad and Proloquo2Go has been worth it. Every anxious moment, every risk we’ve taken saying NO or working a little off-the-grid to make him (and us) adjust has paid off.
The kid is lovely…AND amazing.