Dean (my almost 5 year old autistic son) does NOT enjoy being woken up, however we had to leave by 6:45 am, which is a bit before his natural wake - up time. I had written a "social story" (I LOVE the website tarheelreader.org - SO GREAT) to help him know what to expect. It said that Monday we would go to the hospital (and all the steps involved, from arriving to returning home). He kept screaming "It's not Monday! Pretend it be Tuesday!" Which was adorable and all, but I need to get going and that kid is strong - he can be tough to force into anything. He was also not too happy that I wouldn't let him eat.
Every transition takes great effort. I was grateful for all the airplanes we could count while driving (great distraction) and the flexibility of the staff at the Children's Hospital. He didn't have to wear his ID bracelet until after he was put to sleep and they let him wear his own clothes! That said, it was still very challenging.
After all my cooperation-tactics failed, I had to pry his mouth open and force him to drink the "goofy-sleepy-care-a-little-bit-less" medicine. Since this made him loopy & prone to falling, I had to hold onto him. He didn't want to sit in my lap and color though, he wanted to run out of the room and go home. It was less than an hour but it felt like an eternity.
Getting him to stay on the bed and put the nitrous gas mask on was tough. I rode on the bed to the anesthesia room with him while he thrashed about so violently he hit his head on the bed rails twice. The blue knots on his forehead appeared pretty quickly.
I was glad to have an hour to myself! Since I was on my 3rd day of less than four hours of sleep (which is pretty restless and interrupted) I bought both a Coke AND a Full Throttle (glad hospitals are embracing the unhealthy foods so us parents can stay awake). I'm able to read my BSF notes for class that night, but none of the mountain of paperwork I was lugging around with me got done.
I was with him in the PICU recovery with his nurse for a bit over an hour before we were able to rouse him when I changed his Pull-up. The precautions for MH-risk included another 4 hours of monitoring - WITH his IV still in his hand. I found myself spending most of that time on the floor, physically holding him down and preventing him from pulling the IV out.
His meltdown was epic (and somewhat valid, all things considered). I'd give him a popsicle, he'd throw it across the room, then become devastated his popsicle was ruined. Repeat process with: juice box, my cell phone, container of blocks, markers, sticker pages (which he felt the need to rip up before throwing), bouncy ball, his boots, my water bottle, and so on. He would then want things back but if I tried to get up to grab them he's get ahold of the IV and start ripping it out. He was so upset it was heartbreaking to witness.
That afternoon I am enjoying some Mommy-Dean time in the cafeteria. IV-free and armed with a new Hot Wheels car he is delightful as ever as we enjoy a cafeteria cookie before heading home. He finds the skyway fascinating and asks to take a picture of the view so next time we write a Going to the Hospital social story we can use a photo of the actual building.
They were unable to get Dean to cooperate for the x-rays so a nurse took my place watching Bruce while I helped with Dean. Since I was unable to calm him down (this may have been worse than yesterday's meltdown) we opted to hold him down instead. Myself and 2 other employees managed to keep him in place long enough to get the pictures we needed. He was NOT happy with me - and neither was Bruce for abandoning him.
I rewarded Dean with a little dum-dum sucker for going potty and Bruce wanted one too. I found myself mildly irritated with the 2 ladies that felt the need to comment on the sugar I gave my baby but didn't have time to focus on that. I was bummed that the day took so long I had to miss my last Mommy-Baby ECFE class today and that Dean once again had to miss preschool, but glad I could cut 2 destinations off my day.
So - we are almost to a resolution regarding Dean's seizures, the testing for his tummy troubles is in process, and I have some tools to help with the sleep struggles. Progress is being made.
The rest of the day hasn't been much better. My WIC appointment with Bruce took almost 2 hours of my evening, I had to help the girls finish up their schoolwork, and the County Nurse comes tomorrow to determine if we qualify for PCA services or respite care. I'm eager for this potentially live-changing appointment, but I need to clean a bit first. There's no way I can get all the mess clean but I need to at least make sure the home looks child-safe and sanitary.
I also received a mountain of paperwork from MA/TEFRA to complete within 10 days which requires I call them because I don't understand what was wrong with the stuff I have already sent in...
It's 5:30 am and I've just gotten Bruce to sleep for the 3rd time tonight. He cannot self-soothe and my boob is raw. Just the one though - he won't bleepin nurse on the left side and I find that the comedic value in this has long worn off. I've been attempted to transition from in my arms, in my bed, all night, every night, to a porta crib right next to my bed.
I set the timer for 5 minutes to force myself to stay away that long (he's a year old now, I'm not a cry-it-out-method mom but his sleep habits are disruptive to the whole family at this point). I hear the turtle tank filter buzzing and get out the watering can to fill up the tank a bit (today's turtle tank discovery is bubbles - Dean puts something new in there daily - and bubbles are oozing out of the filter). This causes all 4 cats and the dog to come running. Indeed, they too need water.
Timer goes off, I can scoop up my screaming baby now, but I trip over the sewing machine cord on the way to my room. Hannah Montana! I totally need to sew those super hero cakes and make the cupcake stands for the Teacher Appreciation Lunch next week! Crap, how is it already almost time for that event? I can skip sleep for another night and work on it all later because for now it's almost 6 am and the alarm will go off in an hour. There really needs to be more time between going to bed and waking up! *Yawn*