This is waiting at Vandy before we got into a room. We had parked in the parking garage, walked across the street, peeked at the train display and waited for a room. He was border line freaking out at this point. He started fretting when we pulled in the garage. The wind blew him as we crossed the street. The train display was loud and several kids gathered around. I was afraid he'd get sick and no one would have "proof" of it! He did however giggle on the elevator on the way up, even though it stopped several times before hitting the 7th floor! He has NEVER laughed and usually screams! This should have been an indication that things weren't going to go as I had planned!
This is right after he got all the electrodes attached, wrapped and ready to test. There are no pictures of the hooking up cause I was doing the holding and despite his low muscle tone, he doesn't lack muscle strength, especially when held down and tortured! It was quite traumatic for him and he screamed like crazy but he never got sick! Again a sign this wasn't going to be as easy as I had hoped!
All that gauze is covering up this mess of wires! This was as he was getting unhooked but it really shows how many electrodes they use.
Asa's EEG and the video of him in bed! I felt like I was on candid camera!!
Again with the surprises! Asa was an eating machine!! He had all his Pedisure by mouth. He had applesauce, mashed potatoes and gravy, sliced carrots, juice, sugar cookie, Gerber crunchies and roll!!! Not all at once but this is more than he tries in a week!!! I was shocked and have lots of pictures of him eating!
A friend came to visit and instead of being cautious and jumpy, Asa was all about playing with Ms. Cheryl!! As she was talking about her grandson going to school, she used the word "bus" and Asa started doing the hand motions to Wheels on the Bus!!! I first "met" Cheryl on an online support group for families with hypotonic kids. We learned we were both from TN and had Drs. at Vandy. Soon Asa was diagnosised with mito and now her grandson, Bricen, is being tested. Bricen had this same test done earlier this month and saw Dr. K this month too!! I met Cheryl and Bricen in real life at a mito meeting earlier in this year! Now they are not only special online friends but real life friends as well! Thanks Cheryl for breaking up my night and playing with Asa!!!
Ready for bed in his little wifebeater and boxers!! Like a little man! He liked all those wires and made it fine all night with them at the top of his bed. I didn't let him play with them all night!
The whole test wasn't so bad though! He enjoyed hanging out in bed. He got new toys to play with from the Child Life lady.
This is right after the "startle"! Notice the stacking, slouching and droopy eyes. He was all drooly and gagging and I hooked him up to drain. (I didn't post a pic of that though! You're welcome!)
He got to get in a big bathtub to clean up! He still takes a bath in our kitchen sink to save my aching back but he did love being in a big tub! He was a splashing machine!!
He got all red face and droopy again when he fought getting out of the tub! Now he is clean(er) and ready to go home!!
I tried and tried to induce a startle on Thursday and then on Friday morning. I was doing everything I could think of to rattle him and he laughed!! He may have jumped but he always laughed!! I was loud, I slammed doors, I tickled and rough housed, I did everything I could think of!!!
So how did we finally get the startle? The neurologist came in with 6 or 7 other people (nurses, care partners, students, attendings). They came to startle him but before that even started he touched Asa's arm to examine him and Asa started screaming and getting rattlely! I was pretty sure that had done the trick but for good measure the neuro slammed the bathroom door! The others clapped (I think they were going for a unison clap but they missed!). Asa was definitely reacting but for safe measure, they repeated the whole thing again! Bathroom door slam, random clapping, loud talking and Asa screaming!! I mean SCREAMING!!! It worked! He calmed down and I laid him down and he went to sleep! They witnessed his whole workup and it wasn't a seizure!! It WAS NOT a seizure! I'm so glad they got a really good look at the whole episode and even more happy that it isn't seizure related. Woo Hoo!
Turns out the little guy freaks out about what most of us wouldn't notice as stimuli. Most of us aren't bothered by wind in our faces, noisy crowds, ice makers, yelling, new places. But Asa is bothered! Big time bothered. I'm relieved to know that it isn't harmful to him to have these episodes cause it is rather hard to avoid them all. Hopefully he was get better at adjusting to this world and these episodes will slowly go away. They have decreased but we have decreased his exposure too!
I'm glad we had the test done! I won't worry about him going to school as much. I'm sure he'll have many episodes in that environment! And Asa and I both kinda enjoyed our 2 days away from home. Since there was no majorly invasive stuff done to him, it was kinda like staying at a hotel! I ordered room service and watched TLC. Asa had a quiet room (mostly) and played with new toys. Someone brought me his Pedisure and meds and I gave them to him. I had a good visit that broke up some down time! Not so bad for a night and 2 days in this circumstance! I have NO desire to go back under other circumstances and no desire to go back for this test anytime soon!!!!