Clouds, May 2010

Clouds, May 2010

Tuesday, May 25, 2021

superhuman strength

Hayden's developmental pediatrician, the doctor who manages his medication regimen, has wanted Hayden to have bloodwork for some time now. This is due to one of the medications that he switched to a couple of years ago. At the earliest time that it would have been appropriate for him to get the first blood test, which was within the first year of taking it I believe, it did not happen. Less than a year after that, the pandemic happened. His visits with the developmental pediatrician went virtual, but he did have an in-person visit with his regular pediatrician for his annual checkup. Based on his health at that time, the pediatrician said if we did not yet feel comfortable bringing him to a lab for his bloodwork that we could wait. Well, now we're into the following calendar year. At his most recent scheduled visit with the developmental pediatrician, the concern was voiced that now it really is time. The latest script for the bloodwork was due to expire soon as well. 

Dan & I planned to attempt this today. The last time Hayden had bloodwork he was just a little kid-- (due to suspicion of Lyme disease--) & he doesn't remember it. The time before that he was barely a toddler & that was the big one-- just before the fragile x news-- because he was tested for everything under the sun to try & determine the cause of his developmental delays. So knowing that he didn't have a point of reference (if you will) for getting a "blood test", I simply told him you don't have to answer any questions (he takes things literally). I said it's a tiny sample from your arm, & it's really quick. He was immediately anxious but I reminded him he felt the same way before the dentist, & before this appointment & that appointment, but then after he got it done he was always proud of himself. Naturally, he also wanted confirmation of a prize after. 

The developmental pediatrician referred us to a lab within the same healthcare system, & explained that they are experienced handling all kinds of kids.

When we called the lab to schedule the non-question blood test, we found out they only do walk-ins. I explained our situation, did not sugarcoat the challenges this would pose, & they said as long as we come between 10 & 2 they would have the maximum number of technicians on staff because the morning & evening hours are more staggered. They also suggested having one of us go up first to register Hayden so it's less wait time. Called again about an hour & a half ahead of our likely arrival time, & I gave them a heads-up about what time we would be there. The woman I spoke with said she gave the lab his name, so at least they'd know who we were when we got there. Dan arrived first & what do you know, they wouldn't let him register Hayden without Hayden being present.

Then they told us that only one parent would be allowed in with him & I re-explained that this had been communicated ahead of time because we're going to need all the help we can get.  And the only reason I was able to reiterate that-- (not a smart thing to say in front of Hayden--) is because Hayden had sat down on the other side of the waiting room with Dan, who was now on the phone with the insurance company. Why? Glad you asked. They needed to know ahead of time which lab they could send the sample to for testing, so it would be covered.
Hashtag #ThanksForTheHeadsUp & #AppointmentsMatter

Went to a sub-waiting room for a short bit, & when they finally called us in there was one person.
Also worth noting that moments before I saw a mom & her baby exit the middle exam room, with said person, who proceeded to tell us to enter the same room. So now I’m painfully aware that the room wasn’t sanitized between them & us. We walk in & although the paper on the exam table looked like it hadn’t been touched, the chair where you sit for the blood draw had a plastic needle cap on it. I was at a Kohls recently, & they wouldn’t even call the next person up to the cashier without sanitizing the entire counter-- true story. And here we were at a blood lab within a children’s hospital on the heels of an unprecedented pandemic. Lucky for us, no shortage of sanitizer in my purse so I did my thing.

Anyway, this woman—albeit friendly, because she was—was also not getting anywhere near putting that needle in his arm. She went & got another woman to try. Same thing. So we finally asked where the others were & they said they were all at lunch. Silly us for not communicating with them ahead of time so they knew when to anticipate our arrival. (Oh, wait. Nevermind.) We did however remind them that they had told us to come in the middle of the day, to be able to accommodate him.

So the next fun part was waiting for the others to return from lunch. All of this extra wait time which should have been avoided was of course increasing his anxiety.
But it gets better.

During that time one of them saw a notation on his paperwork & asked if he had fasted. I said no he did not.  (A) I did not realize he should have, but (b) that would not be possible without being able to schedule an appointment. Also worth noting that at one point, one of them offered Hayden Lorna Doone shortbread cookies & a juice cup… to try & help him calm? I guess? And even if she didn’t know his diagnosis, she knew she just offered a snack to a kid with special needs without asking mom or dad if he can have that or you know… has allergies or something. Nothing important. (There were also sticker offerings-- I think he left with half a dozen or so.)

I calmly said no thank you to the snack & added that he has a strong gag reflex, & that when he gets upset he could throw up. Also added that he doesn’t drink juice (so they offered water). Side note, if we needed him to fast ahead of any bloodwork, even with a hypothetical appointment, one more minor complication is that we can only get his daily medication in him with food.

When everyone returned from their lunch break we were then directed to an identical exam room next door-- sanitized status unknown, but thank you for the extra transition. We love transitions. And waiting. But most importantly more than an hour after we arrived, & with the strength of 6 adults (including me & Dan) to restrain Hayden, they got the blood draw done. One of the technicians was a young, tall, strong-looking guy. He took a step back after it was done & he said to no one in particular, "he is strong." I responded with a nod, & said "we communicated this ahead of time.".  I am not so sure he heard me with all the commotion, & the people, & the face masks. Also not so sure he realized he repeated himself, but as he was still catching his breath he said again, "he is strong." I said, "yes, pediatric because he's still a minor but certainly not in size." He heard me that time & then looked at me in agreement, & I think he may have repeated himself one last time. Nice man, & I appreciate the way he approached Hayden when he walked in the room, but he was not prepared for our Hayden. (We tried to tell them.) But when you have that much solid weight of anxiety in front of you, & you drive said person into a fight-or-flight mode, you're going to get an almost superhuman strength. (A couple of years ago when we went through that particularly tough time with him, one of the days when he became very heightened & out of sorts he actually moved part of our sectional with me on it.) Hayden does not know his own strength. Separately, he also has an emotional memory though. For this & other more obvious reasons, I have already communicated to his developmental pediatrician that we need to figure out a way for him to be better assisted in the future.

In addition to Hayden yelling during the blood draw that he hates blood & "why are you doing this to me" & "why are you so mean to me".... he also communicated many times over (especially beforehand when the first two technicians attempted the blood draw on their own) that we need to call Grandma & Pop Z & tell them where we are & what's going on. He kept telling the technicians he needed to call his friend, his buddy (a.k.a. Pop Z). It seems when Hayden was in crisis today, Dan & I got demoted. 

Fast forward to us finally getting out of there, & Hayden wanted to go in Dan's car. After all, I brought him to that place so I guess he preferred his dad to take him the hell away from it. So I called Pop Z on the way home because I figured Hayden would try to call him as soon as he could. And since my dad was working, I wanted to give him a heads-up because he might not be able to answer the call-- especially because it would be video. 

Hayden ended up waiting until after a previously scheduled session with his in-home counselor this afternoon, & then he called Pop Z from his iPad. Just going to interrupt that thought for a second, because when I picked Hayden up early from school his teacher said he was all pumped up & ready for his blood test. Hayden definitely knows when there are opportunities for him to be proud of himself, & for others to be proud of him. So this is also why I wanted to share what happened today, because his conversation with my dad opened with Hayden exclaiming, "I got good news! I got my blood test! It went fine!"
He also proceeded to tell Pop Z that he's getting his COVID shot next week. Mind you this is news to us, but more power to ya kid. 

Then later, he called Grandma Suzi from his iPad to ask how her nail appointment went (which he must've heard about from Pop Z). I was within earshot & it sounded like she showed him her nails... & he said they look so good... & he wanted to know who did them... & how long it took... & then he also told her the same new-news about getting his COVID vaccine next week. Apparently. 

About that prize, by the way, his birthday is not for another month but I gave him one of the presents I had set aside. Honestly, if I had the means I might've given him an entire store today. Or an auto body shop. Something.
After everything that happened today, I just keep hearing his voice, "I got good news! I got my blood test!"
That attitude. That 's the superhuman strength right there. 

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