Adventures in Autistic Parenthood

Wednesday, June 6, 2012

Good Boy at the Hospital:

Look into my eye! 
Over the Easter holiday Dave, Raine, and I were visiting Raine's mother at the hospital. She's nearly (if not over) 80 and sometimes her health is a bit chancy. Now Dude loves Raine's mom, and he'd never want any harm to come to her, but he's almost overjoyed to hear about any time she's admitted to the hospital. 'We have to go to the Hospital building and ride the elevators!' Is normally his response to hearing about the woman he calls grandma's latest health crisis.
   After the visiting part was over and the 'Raine spending time with mom' part had begun, Dave and I went for a walk outside. And as we were walking back down the hallway to the elevators a man passed us on the left and Dude made a funny sound. Dave generally walks around plugged into his 3DS and doesn't have any social shame anyway, so he often makes noises or says things that people can misinterpret and take offense to. So I turned to him to shush him and was shocked to see his face locked into a spastic rictus and as his whole body jerked several more times strange grunts were forced from him. Even though he'd never had one it took me only a moment to realize that he was in the midst of a seizure. With his back against the wall and his body spasming he turned toward me as best he could and with a heart-rending plea in his eyes, and tried to reach for me as his body betrayed him repeatedly. I immediately reached to him and lowered him gently to the floor. I cradled his head and quickly scanned him as he went into full Grand Mal, or tonic-clonic seizure.
   One of the few benefits of being me is that I am my own PA system. When I need to be heard, I will be, no matter the background noise. So when I yelled, 'I'm gonna need some help here!' the previously empty corridor became a beehive of activity in mere moments. The professionals shuttled me to the side (not knowing how useful I can be) and immediately began to have problems lowering the gurney, lifting him onto said gurney, and then getting the damn thing to stay up once they'd raised it again. I finally stepped in and helped the nurse at my end to secure the thing. Another nurse (what was she doing this entire time? No idea) asked me if Dave had ever had a seizure before and in the 5 seconds it took me to answer they somehow made Dude disappear. I looked down at my hand and had no memory at all of how the hell I'd managed to separate David from his DS3, but there it was. Right there in my hand.
   The next half hour was pretty much a blur of worry and intake paperwork and texting Raine to let her know that we wouldn't be returning to her mom's room anytime soon. I just barely made it into the secure area of the ER when I was snagged by the Dictator of Documentary Bureaucracy, at least I think that was her title.  I hate hospital paperwork. I know it's necessary, but all I wanted to do was run down the hallway and start rifling through rooms until I came up with a Dude. So while the (supposedly) nice lady was asking me insurance questions (at least I think that's what she was doing) I was craning my neck around and not really paying any attention to what she was asking. I think I got Dude's birthday wrong 3 times, and I pretty much know it better than my own. People ask me for his a lot more often than they ask for mine.
  Then the Cavalry came charging to the rescue in the form of Raine swooping down on the ER like a mother eagle. I heard her voice berating the ER reception lady from across the hall. 'What do you mean I can't go see him?' I heard in an angry, strident, but somehow familiar, tone, 'You'd better open this door, or I'm gonna break it down!'. Luckily for the receptionist I stepped out into the hallway and told the lady she'd better let her in before anyone found out if bullet-proof Plexiglas was also Raine-proof (she had chairs close at hand, and the will to use them).
   As I was explaining to Raine that we had to wait until after the initial Doctor-hovering to see Dude, a nurse walked up to us and said we could go see him. He was something of a minor mess. He'd been stripped to his skivvies and mostly covered with a blanket and was lolling around in a totally un-Dudelike state. If I hadn't seen post-seizure reaction before I'd have thought they'd sedated him to keep him quieter. (Which at times has been tempting, but I've never actually done it) Like most patients after a seizure Dave was pretty much... well stoned. Slurring his words and making even less sense than usual. He was in and out of it for a while, but he seemed less restless with me there holding his hand. So that's what I did for the next hour, or so While Raine finished off the paperwork woman. (I meant 'with the paperwork woman', I'm almost certain I meant 'with') After watching me with him while they administered an EKG, the ER nurses began to get some idea that it might be a good thing to have me around, so they insisted I attend all the tests.
  After a while, when Dude was recovered somewhat, the time came for 'the tests'. First up was a CAT scan of his brain. So they wheeled him out of the room, bed and all, and immediately rammed the corner into the door frame. Dave hollered out, 'Watch out! There's a door there!'. and then, as the nurse bumped the door again because she was laughing, 'Be careful! We don't want to go to the Emergency Room!'. Let's just say that her driving skills didn't improve. It's hard to double over with laughter and see where you're going at the same time, I guess.
Am I under arrest?
   I almost had to tackle Dude back down on the bed when we got to the elevator. You see, Dude is our elevator man, and he knows it's his job to push every button in the process. A little thing like being a patient lying on a gurney shouldn't affect that. When we eventually got to the imaging room and faced the CT scanner it was my job to hold my son still on the table with his head in the Doughnut of Destruction (Spaced Invaders) while keeping my hands out of the image. Yeah... good luck with that. That's something akin to trying to keep a caffeine-crazed ferret inside a box of cereal with a pair of chopsticks... behind your back. But somehow I seem to possess the skills required, (though I hope no one films my face while I do these things), and miraculously an image was acquired.   Now I never saw the images, and even though they said they were 'normal'  I imagine they looked something like a game controller next to a bowl of Mac&Cheese inside a skull. Next was the X-ray, and our travelling nurse stopped the x-ray tech on approach, nodded at me and said, 'Get him an apron, you want him in there.' I guess they figured I had spawned enough mutants without the help of radiation. After making Dude pose in front of the nuclear beam like a marionette without strings, we headed back to his room. On the way back down to the ER Dave performed yet another kamikaze move to hit the elevator buttons, but the nurse was now a veteran and she quickly shoved the gurney up next to the buttons in time to keep him from scrambling his egg on the floor. Buttons pushed by the Agent of the Elevator we descended back to the proper floor.
    When we were escorting the Rockstar's bed through the ER halls and back to his room I heard several of the nurses already talking about David in that awed, giggly tone of someone who's been hit with a cute-ray set on 'Oh My Gosh!'. I don't mean to sound petulant, but I'm sure there weren't this many women thinking I was this cute when I was 17. Certainly not when I was lying half-naked on a gurney, or possibly even when lying all-naked anywhere. Anyway, despite his father's jealousy Dude's hospital visit seemed to be going well.
   After a few more tests, some consultations, much spinning of prayer wheels, and, for all I know, a flip of a coin. It was Determined (by some office drone at Tri-State Pediatric, David's GP) that Dude had the ill-considered bad taste to have his 'event' at the wrong hospital (so much for the good-luck factor). So we were advised to go back home, wait for him to have another seizure, and then take him to a more fitting hospital (one that they had an association with). Needless to say the anxious large man with the long hair (me) was not pleased. So not pleased in fact that he flat refused to go home and insisted on a transfer to Children's Hospital of Pittsburgh within the hour. And so it was to be.
  Dave loved the ambulance ride. He especially loved to tell the guy driving how to get someplace Dave had never been before. They made the mistake of mounting their GPS where Dude could see it, and he called out directions the entire 20 minute trip. With a double dose of directional assistance we made it safely to the ER at CHP (Lots of anacronyms in this one). Which was exactly where the officious oaf from Tri-State wanted us to end up (after another seizure for cripe's sake) but it was also exactly where I wanted to be. Children's has the best group of doctors in the area and I wanted a part of that focused on my son.
So let's tally up and see what has been done so far:
1 X-ray
1 CAT scan
2 EKG's (one at each hospital)
3 Doctors
2 X-ray techs
7 Nurses (now under Dude's Evil Spell. pat.pend)
And 1 officious  oaf (is there any other kind?) from Tri-State Ped.
None... Zero, zip, zilch, nothing, nada, bupkiss. Other than affording Dave the opportunity annoy a couple of  EMT's and to turn several more nurses into robot-slaves, the whole evening was a bust. Except for the fact that Dude was now in the system. That's where the real results would come from... or so I thought. In the ensuing 3 weeks we added a cardiologist, 2 more EKG's (machine/Dude interface malfunction) a neurologist, an EEG (and technician), an MRI (and tech) and a veritable gaggle of giggling nurses to the list. And next month we go see a Geneticist, presumably to tell me what kind of mutant my son is. (The Cardiologist didn't like when I said that) Actually to check for Fragile X, as a possible cause for his autism, and ARVD, a genetic heart condition that runs in my family. The Grand Sum Total of the last 2 months watching every twitch of my son expecting him to explode? Or, more realistically, to seize? Imagine if you will, the entire medical community of Pittsburgh shrugging their collective shoulders. I'm starting to think Dude staged the whole thing just to get to ride new elevators....


  1. I always get a kick out of your posts! Timely on this one because I am currently hospital bound with my little guy (freak virus, severe, subhuman dehydration,and a severely impacted bowl). Thanks for the laugh, and fingers crossed for Dude !

  2. Thank you! I hope your little guy feels better soon. (I don't know what subhuman dehydration is, but it sounds impressive) Anything that can give a laugh to one of the 'clan' is a good thing, and I'm honored to be amoungst that company. (Sounds like practicing for some sort of acceptance speech, but the sentiment is real)I'm sure they'll be fine and whatever we find out about Dude won't change what he is, just might give some insight as to why... You know, other than the whole 'he's my son' thing. Take care.