I just got home from dropping the kids off at school, I’m just washing my face, you know, getting ready for my day — And I get a phone call — Crossland PS — my heart literally always stops every time that number comes across my phone… so what now? — PANIC!!
I answer the phone, it’s the office manager, Andrea. She very calmly tells me something to the tune of: “Chris, the alarm on Mia’s pump is beeping. It says there’s a blockage and the pump has stopped. She’s kinda freaking out what can I do?”
In my mind: Oh F*ck!
But what do I say?: “Ok thanks, can I talk to her for a sec please?”
Mia (thru tears): Mama, it’s beeping and I’m scared”
In my mind: Omg! Omg! Omg! Are you f*cking kidding me? WTF? What the hell do I do? Shit. Shit. Shit.
But what do I say?: “Ok baby-girl, no biggie, we’ll be right there. Love you, kiddo”
In my mind: Holy F*ck!! OMG! Omg omg omg….Where’s Mike? Ok, alright… yes! He’s out gettin’ stuff… Ok. Call Mike… he can drive us both to the school. I don’t want to do this alone!!! Ok… VM. NoOoOo! Ok. It’s ok… call again VM. Breathe Chris… just breathe. Call again. He answers! “Hey babe… can you swing by and pick me up… the school called, the alarm on Mia’s pump is going off… it’s saying there’s a blockage – and the pump has stopped… we gotta go, Okay?”
So I start gathering up the stuff that I know I’m going to need when there’s an emergency… well theoretically… because I’ve never actually had an emergency before!!! I have no idea what I’m about to face; so I grabbed my emergency bag — ALL of what I need is always in that very well-stocked emergency bag that I carry everywhere I go — I grab my manual aaand out the door I went. Ummm, ya so… it’s cold out today, I’m standing like an idiot freezing my ass off in my driveway just waiting for Mike, who, in my mind, is taking FORever (even tho I know he’s not) so I go back inside and grab the keys to the other car – ’cause seriously; I cannot get to the school fast enough!! – when Mike pulls up. I jump in, I’ve already got Laura on speaker phone and while we are driving toward the school, she’s giving us on instructions on what to do when we get there. (Laura is the nurse associated with McKesson pharmacy who supplies Mia’s drug and she is part of the 24 hour Remodulin support line) We pulled up to the school… and thru the window we can see that Mia is calm… she was laughing and being silly with Robin, Andrea and Nadine.
In my mind: Thank God she’s not hysterical!! Hysterical is so much harder to deal with. This group of staff are absolutely amazing! Ok – So, that’s the mood we need to go in with order to keep up with her current state of mind… Excellent. Good to know..
So when we walked in… you’d probably never know we were actually scared shitless!! In fact you probably would believe the opposite was true… you would have thought we’ve done this a thousand times before, like it was no big deal and that it happens all the time. We’re Laughing. Making jokes. Making sure no one is freaking out… especially not Mia!! Using everything in my emergency kit, and with nurse Laura on FaceTime, we’re calmly figuring out what the heck was wrong, why is this alarm going off!?!?
In my mind: Is Mia even getting any her medication? Holy Shit!! How much time do I have left? OMG! I am ACTUALLY living my nightmare.
This is the first time the pump’s alarm has ever gone off AND of course the first time has to be when she’s is not even in my presence!!! This is the first time I’ve gotten an emergency phone call!! This is the first time I have to use the emergency procedures that I’ve only read about, but I have yet to see; let alone perform!! And not only is this is the first time I’m doing all of this, but I’m doing it with an audience!! And I can’t even freak out, because I am trying not to freak out Mia!!! Finally we figured out what the problem was… It was actually a malfunction in the pump itself. That means that this time her life was never actually in danger: BUT WE DIDN’T KNOW THAT!! In MY mind: It felt like my daughter was attached to ticking time-bomb, and WE were the Fricken Bomb Squad!! Lemme tell you… that was intense!!
And when it was all over, after we’d found the problem, remixed a cartridge of her medication and hooked her up all safe and sound to the back-up pump; even tho she was a little shaken, Mia stayed at school. I guess she felt confident that I knew what I was doing (if she only knew what was in my mind!) So when we were done, she just went about her day as if it was absolutely normal; like nothing out of the ordinary had happened!! New Normal? Maybe?, that’s all we ever want for her.
But let me tell you… as soon as I took one step outside of that school. I started hyperventilating. I couldn’t control my breathing. And I sobbed uncontrollably. I believe I was on the verge of a panic attack. I gave my head a shake as I tried to comprehend what the hell just happened? What did I just do? What if….? And then I broke-down ~ Into a completely useless sobbing mess. I took pretty much the rest of the day to shake it.. I really hate stress.
I am really glad that I am able to display a pretty calm appearance on the outside, when I was shaking like a leaf, scared as hell and wanting to die on the inside. That was reeeeeeally really scary!! Realistically, I can say that that was the scaredest (is that is even a word?) thing that I have ever had to do since before her diagnosis. And I have seen and done some scary shit! I don’t wanna do that again. Holy Crap. Just breathe. Breeeeathe. Exhale…
UPDATE: Laura got the pharmacy to ship out a replacement pump immediately so that we didn’t even have to think about not having a back up pump. It arrived 4 hours after we left the school. incredible.