Derek and I have begun to decipher Greyson’s vocal stims. Luckily, this informs us if he’s happy, sad, angry, or that a tantrum is about to start. He has 3 distinct sounds he typically makes:
“Digdigdigdig a digdigdooo”- he’s happy and wants to play.
“Duka duka duka takaduka”- he is getting upset or needs something.
And finally, the scariest of all stims, “Duh, AH-DUHHHHHH!”- this one typically means that you better watch out because this kid is about to throw a massive tantrum, aggression and all.
Derek and I weren’t sure how Greyson was going to react to this week. He had his first day of school yesterday, had a sedated MRI/MRA today and will have another appointment upcoming on Thursday. Definitely an “Uh-Duhhhhh” kind of week.
We received Greyson’s preschool placement on Friday and he began yesterday morning. He was placed at Reidenbaugh elementary school in Manheim Township, in the IU-13 preschool room. Having worked there for the 2012-2013 school year, I am very familiar with the building and the areas that Greyson would be learning/playing in. Due to our work schedules, Derek would be dropping G off at school, Pappy would pick up @ 11:15 and Roslynn would be with my dad on MWF (her preschool starts in September).
Derek dropped G off at Reidenbaugh at 8:00 am. He was very confused and fussy when he realized he wasn’t going to the typical place (Grammy/Pappy’s House) he has been going for 3 years. Once they got to the special education wing of the school, Greyson was actually excited. He willingly walked into the school, holding his PCA’s (Personal Care Assistant) hand. Much to my surprise, he was happy when Rick picked him up at the end of the first day! Not sure who was more nervous- Derek and I, or Greyson, for him to begin school. It’s extremely difficult to leave your child in the hands of staff you’ve never met, with other kiddos that he doesn’t know.
Because he did so well (and I think Pappy really missed him), he had a lunch date with Rick after school at McDonalds. He did great! Probably the 2nd or 3rd time that he’s ever been at a sit-down place for food. Derek and I are hoping that the structured setting of the school will help G become more compliant. At least compliant enough to take him out to do things in public.
Today, we were up at 4 am to head off to Philadelphia for Greyson’s MRI/MRA at CHOP. The drive is typically smooth until we get off of the turnpike at Valley Forge, then we fight traffic until we are in the city. Expecting this, we left about 15 minutes earlier than we needed to, just so we had time to stop if we needed and to fight the bumper-to-bumper Tuesday morning traffic.
We made it to the hospital with 7 minutes to spare for parking, security clearance and check-in. I always think that things like this will get easier. The bigger the city, the bigger the risk, the bigger the hospital, but it never does. If you know me, you know that I used to love cities, but now I loathe them. I am a homebody that would prefer to live in the middle of nowhere, with an amazing view of farmland, and no neighbors around for miles. But because I grew up on the outskirts of Lancaster City and with my frequent trips to NYC in my younger years, I am pretty good with navigating my way around. Greyson was blissfully unaware of why were were at the hospital, until we went back to the prep room. That’s when his “white coat” syndrome kicked in.
The nurses and docs knew in advance that G was a complicated kiddo, who hated doctors (rightfully so with how many times he’s been to the doctor in his short 3 years alive). Childlife was present, which was amazing because they helped keep him entertained until the sedation team came in and explained everything to us. Because of his allergy to red dye, the anesthesiologist administered relaxation medication via a nasal spray into G’s nose. This would relax him enough to get his IV in for the actual sedation med.
Side note: I love the YouTube videos of kids who get their wisdom teeth out and are super high afterwards, acting all crazy. Which is exactly the way that G was acting. I joked with the doctors that I needed to take an extra dose home for him, because he was so relaxed and care-free. I had never seen him so loopy.
Once his IV was in, he was sedated with IV meds and was out cold. The doctor said we could expect for G to be in the MRI machine for about an hour to and hour and a half, so Derek and I sat in the waiting room for the procedure. It was fairly quiet, so we were able to make calls we needed to, regarding his schooling and nurse coverage, etc.
90 minutes came and left. I wasn’t getting nervous quite yet, but once 2 hours came, I was getting concerned. I watched other parents go back to their kids in recovery, especially ones that came out to the waiting room well after we did. Finally, the nurses called our name and we were able to back to the recovery room. Greyson was still out cold, and the nurse informed us that he had been in recovery for about 45 minutes, but he needed to have a device inserted in his mouth/throat to keep his airway open, due to severe snoring. The doctor came in a few minutes later, as I was trying to wake G up, and informed us that he definitely should be checked for a tonsil/adenoid removal because of how large they are. (Great, another thing to add to the laundry list of specialists we have to see). I wasn’t surprised because I too had issues with snoring/breathing when I was younger because of the exact same reason.
G finally woke up about 15 minutes later and was still extremely drugged up. Despite a tantrum after removing him from a play car that childlife brought in for him to play with, Greyson did fantastic. CHOP is the way to go for any/all procedures. The drive is a pain, but the care G received was the best we have received yet. They really are a great hospital and go above and beyond for their patients.
We got him up and drinking juice, so we were discharged fairly quickly and were on our way. Now the hardest part. We wait. Waiting is the worst of all, but because we did the imaging at CHOP, our new neurologist should be able to read it ASAP and give us results tomorrow or Thursday. Maybe right in time for a great 30th birthday gift, that his MRI/MRA is looking better now than one year ago?