Wednesday, February 26, 2014

Our Special Needs Journey:Part 9 - Siezures, Sleep Struggles, and a Sour Stomach - More of Dean's Journey


Dean had to be sedated for a brain MRI yesterday.  This will help the neurologist develop a treatment plan for his seizures.  Due to a family history of something called Malignant Hypothermia all our children must undergo anesthesia a bit differently than the typical process.  We must be the first appointment of the day and can only be seen at the Minneapolis location.  The room is set up much differently because IF the kids have MH (and ruling it out is nearly impossible) breathing in the gas form of anesthetic is deadly.

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.


I know it's a bit cruel to take a photo of my child's tantrum, but about 2 hours in I felt like I deserved a gold star and wanted to show it to my hubby.  I might be able to guilt-trip him into treating me to a kid-free home so I can nap for an hour.  Or a week. Whichever.

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.


The paint sculpture was pretty cool too! 

I made it home with just enough time to fix dinner (I didn't have time to eat it but the kids assured me the enchiladas were yummy), type up the prayer requests for BSF that night, change my clothes & brush my hair, nurse poor Bruce, who I didn't expect to be away from for so long, and head off to Bible Study.  

Oh, and I got to enjoy watching Bruce take selfies while Taylor read her Bible to me!

Dean met with the Gastroenterologist last week because he has been having liquid bloody stools so frequently it was causing concern.  He hadn't been seen since he was two and is well past due for a follow up.  I was double booked that day and Dan took him to that appointment so the needed surgery did not get scheduled.

They called to schedule his colonoscopy and endoscopy yesterday and I found out he needed an abdominal x-ray.  Ack! I literally left the hospital less than an hour before that call! They told me it would take only a few minutes and if I got to the sleep clinic a little early I could get his x-rays done there. Totally bummed that the pre-op exam he had last week is just a few days greater than the 30 days needed. I have to remember to schedule another one of those at some point.

Armed with about 5 hours of sleep (my greatest amount in at least a week) and a TON of snacks for the boys, today I had to be at the Children's Hospital in St. Paul.  I'm not a fan of driving to unfamiliar places (and the roads were icy) so I will admit that hikes up my cortisol level a bit (I'm directionally-challenged, LOL). 

Being directionally-challenged is not limited to driving. Finding my way through all the skyways and multiple hospitals & medical buildings to get to Radiology took longer than I planned - I had only allowed myself an extra hour. Next time I'm wearing my comfy Nike's instead! :) 

I managed to locate radiology, complete the paperwork, and get him registered but they didn't squeeze Dean in quick enough and I had to leave to rush back to the Sleep Clinic.  Dean enjoyed being the elevator button-pusher and thought the skyway view of the ambulances below was pretty awesome.  I enjoy that we get these fun opportunities to see cool stuff.


I will say after all that running around I nearly cried when the receptionist told me my appointment was for tomorrow. I live by my calendar right now - and I cannot afford to make a mistake. Turns out the packet of paperwork they sent me said "Tuesday Feb 26th" - and I intended to schedule it for Tuesday, as Wednesdays are always insane.  Today IS Tuesday, however it is the 25th. Oops.

Thankfully, they were able to get me in with the Nurse Practitioner instead! She had some great information for me and doesn't think the night terrors are any reason to be concerned. We may need to look into allergies, iron levels, and sleep apnea but first I'm going to try to make some practical changes in our routines and schedules.

We're in survival mode here - we have been basically since I got pregnant with Bruce - so it will be challenging to find the time to establish these changes, but I do know it is beneficial to all of us. Transitioning the boys to their own beds (Dean in his own room and Bruce in a crib in my room to start) is going to be tough stuff.  I'm already so sleep-deprived I'm not certain I can be consistent but I'll be praying about it.

We were in that little room for almost 2 hours so it's understandable that Bruce is way overtired and Dean's acting up.  I head back over to the hospital for those x-rays and although I am pretty worn out at this point (carry cranky baby while pushing stroller with other hand and creatively convincing preschooler to follow along) I did find the boys playing together in the waiting room awfully sweet.

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.


As I was walking to the car I noticed this on the wall. I am reminded of Hebrews 12:1b-2a "Let us run with perseverance the race marked out for us.  Let us fix our eyes on Jesus, the author and perfecter of our faith..." God has a way of speaking to me when I most need it!

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*