Emergency Protocols

I remember my very first earthquake as a teacher. In fact, I was a student teacher in the middle of teaching one of my very first lessons, when the walls pulsed. Everyone froze. The students, myself, the cooperating supervising teacher. All of us. Despite the fact, that we have all gone through so many drills. Each one littered with so many eye-rolls that communicated clearly, "We already know this Ms. Payne! We've been doing it every year since kindergarten!" In that moment though, we froze.

The master teacher was the quickest to recover with a quick, "Well?! Duck and cover!"

I have never scrambled to get under a desk so fast! More panicked about the fact that I had frozen in an emergency situation where I was partially responsible for 30 pre-teens, than I was about the earthquake itself.

And over the years, I have learned that the more clearly defined the emergency protocols are, the easier they are to actually follow in the moment amidst all your own anxiety.

And then when it's your kid...

I woke up one morning last September and Cyrus was having a type of seizure I had never seen him experience before. I definitely spent at least five minutes just hoping, or praying or whatever you want to call it, that he would come out of it before I called the on-call pediatric neurologist at like five in the morning. I don't like that panicked moment of indecisiveness where you don't know what to do.

Then I spent the following week asking every neurologist (and there were a lot of them) that walked through the door for directions on what to do during a seizure, and I never felt satisfied that I knew what to do. Maybe there isn't really anything to do.

It wasn't until we reached our outpatient two week follow-up that we sat down and hashed it out.

1) If Cyrus starts having a tonic clonic seizure for longer than 5 minutes give him the emergency medicine.
2) If he has three seizures within one hour, give him the emergency medicine.
3) If he needs two doses within eight hours of each other, give the second dose but immediately call 911 to have breathing assistance on it's way.

I felt good about those directions. Everything was quantified and has clear follow up instructions.

But I quickly learned, that the emergency protocol never feels well-defined in the actual emergency!

What happens when the tiny child starts having partial seizures instead of generalized tonic clonic seizures? Are those as damaging? Do they need as much intervention?

And yeah, he just had three seizures, but each one lasted like three seconds. Whereas earlier today, there was only one seizure, but it lasted three minutes and the convulsions were far stronger. These three seizures can not really be worse than that, can they?

So really, the emergency protocols are actually:

1) Do you feel safe right now? Or are you freaking out?
2) Is Cyrus awake and aware? Or does he seem totally out of it?
3) And sure, if it lasts longer than five minutes... (which has never happened since the two status seizures in September).

So yeah, yay for "well defined" emergency protocols...

This last weekend, the Sun King has been on a hunger strike or something and been showing all kinds of signs of dehydration (extreme sleepiness, little to no urination, urination is darker in color, fever, fussiness, etc.)

Saturday Evening's emergency protocols:
1) If he doesn't pee in eight hours or his urine is significantly darker, call the pediatrician.

Check and check!

During that phone call, she said to give 5 mL of electrolyte infused water or coconut water every ten minutes. And if he still doesn't pee in two hours, take him to the ER.

I have never been so delighted to see a wet diaper in my life!!

He's actually been doing significantly better the last two days. Eating and peeing again. Still sleeping more than normal, but when he's awake he's actually awake! Went to physical and occupational therapy today like normal, and apparently passed his feeding assessment with flying colors!! And practiced standing up again! (The picture is below! You can tell he is thrilled!)

He seemed to have some stomach bug last Thursday that involved multiple vomiting incidents (though each was pretty mild) that probably (in conjunction with one of our medication experiments) caused all of this. Will definitely be relieved when his full appetite and energy come back!!

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Therapists are amazing!

Watching a doctor wave a flashy wand across your child's line of vision, only to watch your child not respond induces a special kind of panic.

And having to fill out the developmental questionnaire three times in one week for three different specialist assessments is more than depressing.

Does your child track movement?

No, apparently not. 

Does your child hold his head up?

No.

Does your child make eye contact?

Sometimes?  I think? 

Does your child smile?

Yes!

Does your child have a social smile?

No... not really anymore...

Does your child recognize you?

I have no idea. And if I can't tell I'm guessing no? 

And the questions go on and on. The whole thing is really good at identifying in excruciating detail every little thing Cyrus is not able to do.

And so that very first time when his first therapist (she's a visual specialist) hovered right over him and just waited until he focused on her and then moved ever so slowly to his right and he slowly but surely followed her with a delighted coo... Well, that's a powerful moment for a parent.

Shortly after that she had him on his tummy, and just by tucking his arm out of his own way and he rolled over within seconds! Totally and completely for the first time! Beyond amazing!

And that's the thing about therapists, they have a different job than doctors. The therapist figures out everything Cyrus can do. It's not a binary checklist at all - it's a developmental spectrum and they figure out where on that developmental scale he is and then work with him (and train us to work with him) wherever he is to make progress toward those developmental milestones that come naturally for most children.

Cyrus has been receiving services from a visual specialist since August and he just started physical and occupational therapy this last January. The physical therapist works with him on gross motor skills (things like head control and walking) and the occupational therapist works with him on fine motor skills (picking up objects with his hands or eating). Due to my work schedule I have never had the chance to attend one of Cyrus' PT/OT sessions. This week being my spring break, I finally got to change that!

And I found myself floored once again! I don't know how they do it, but therapists totally know how to communicate what they want a nonverbal child to do! Kyle refers to them as baby whisperers. They tuck a limb here or there, tickle his chin or pat the ground and ask in that high pitched baby voice. And Cyrus understands what they want him to do. Sometimes he's excited to comply. Other times he whines in complaint! And boy do they get him to work! They get him to play! Or discover his feet or stand up (with assistance)!

His head control has improved so much in the last 12 weeks - he's far less wobbly than he used to be. Does he still like to arch his head back? Yes! And now he seems to be more aware and purposeful about it, so he'll do it all the time! But from a prone position he can totally hold it up.

He can roll down a slightly inclined wedge almost completely unassisted on his right side. On his left he still needs a little help. And he seems to enjoy it - loves getting to the cushy mat at the end where he can just face plant!

He will bat at toys or his own feet. He looks incredibly uncoordinated when he does so, but there is little doubt that it is intentional. He even has a favorite iPad app! Some barnyard game or something... I don't know what it's called.

And yesterday evening I was making faces at him and he was imitating me consistently three or four times in a row.

His seizures are still better controlled than they were last January with a seizure free Saturday this week and only small ones since then. So overall, we've been seeing only improvement in these last few months! So grateful for the doctors, and especially the therapists that have helped us make this progress!

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Starting to Notice

Cyrus is getting to the age where it is becoming obvious that he is unusual.

Because he is so calm most of the time, we will take him everywhere. To friends' houses, out on hikes, to that weekend spiritual retreat, or out to dinner, etc. We'll just roll the stroller with the carseat right up to the side of the table or next to my seat. The hostess will often ask if I want a high chair. And the polite ones seem surprised when I say no, the less polite get irritated as the carseat stroller takes up some space!

During or after the event people will come up and comment.

"I think it is just so great how he just sat there so calm and let you have a dinner together."

"Is he always so calm? You're so lucky! They're not all like that! We couldn't take our son to dinner until he was seven!"

"Just you wait, he's going to running around terrorizing the house before you know it!"

"Is that baby real?"

And for the most part, these comments don't upset me. They do push me into that moment of awareness - awareness that we live in a different world. Because sometimes I forget.

And I want to tell these people:

"Do you realize how lucky you are that your child has the ability to misbehave? I bet you never thought of that as a privilege."

"It must be so reassuring that it's almost a given that your child will live to see their seventh birthday."

"Yes, he's real! You think I push around a doll in a stroller all the time?! What kind of comment is that?!" (Okay, that one might've irritated me a little...)

But I don't say these things. I'm not certain there would be a point. Instead, I gush about how I know that Cyrus is one in a million (literally). And how adorably cute and wonderful he is.

Then there's the comments from people who have some awareness of what's going on.

"He'll be fine. You just have to have a positive attitude."

"The doctor's could be wrong..."

And I can't respond to these. I have no words to say. Instead, I'm just hit with a wave of sadness. But I don't express that either. Instead, I simply smile and nod. Because I can appreciate that these people are trying to be kind, trying to be optimistic and reassuring. It's not their fault that what they say is not comforting in the slightest.

Cyrus is very close to outgrowing his infant carseat/stroller combo. And when it's time to upgrade we may be getting adaptive strollers and carseats because Cyrus can't hold his head up, he doesn't have the core coordination to sit up on his own. I don't completely know what these tools look like or how obviously different they will be - they're so different depending on what the child needs and we're just starting this process.

But I do know that at some point, probably in the near future, it will be obvious not only that Cyrus is unusual, but also that something is wrong. And I think people will naturally avert their gazes and will not comment.

And I think I will miss the random strangers telling me how adorable my son is, how lucky I am that he is so calm.

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