(As a small child, I would get up multiple times after my parents tucked me in for the night -- I always had earth shatteringly important questions that just could not wait for the morning. Now, as a working mother of three busy children, I fall into bed exhausted most nights -- too tired for such wandering of the mind...)
I'm not anxious, but, sometimes, when I make a decision -- especially a big, important decision -- I revisit the decision...turning it over in my mind, re-examining the decision, the various factors, all the angles -- wondering if the decision I have made (whatever it is) was truly the right decision.
I haven't felt that way about our decision to seek post-clinical trial care in the form of private oral immunotherapy to peanut for Susan from Dr. Sakina Bajowala.
I really, truly have not felt the need to revisit that decision -- at any point.
It was one of those decisions that came easily (well, easily once I had done my research -- reading everything I could find about oral immunotherapy and talking to all the parents, allergists, and researchers who so kindly gave me their time and wisdom).
The decision came easily because it seemed as certain as possible that with Dr. Bajowal'a guidance, we might be able to achieve our goals for Susan's long-term consumption of peanut (to continue, and, eventually...hopefully, increase her tolerance beyond what appeared to be a justbarelyandnotalways tolerance).
While reaching a decision was time consuming, once the decision was made, I never looked back.
In fact, I have been excitedly awaiting Susan's first appointment with Dr. Bajowala (tomorrow!)...
And so today, when Susan had an anaphylactic reaction to her single Reese's Peanut Butter Cup, even though I have never once second-guessed this particular decision, I found myself thinking that if I had ever felt the need for confirmation of the decision, her reaction to her dose today did it.
Susan had homemade muffins (a staple in our house, and no new ingredients), melon (one that she eats regularly -- and that she had had the previous day), yogurt (a brand and flavor she adores and eats almost daily), and milk -- from a carton she drank out of yesterday for breakfast. After breakfast, she took her Zyrtec, Omeprazole and Famotidine and then ate her single Reese's Peanut Butter Cup. She finished at about 9:15 am.
About twenty minutes later, after hanging out with me and Sophia, our cat that chose Susan as "hers" about five years ago, Susan and my younger daughter asked if they could go outside, to sit on our oversized chaise lounge and read.
When I suggested an oversized chaise lounge to our landscape architect, wanting to be sure our patio would have enough space, I know she could hardly believe that I was asking that the size and shape of our patio be configured around a piece of furniture, but I knew -- long before we even had it -- that our big green chaise lounge would be a highlight in my life -- and I was right. I love it as much this summer as I loved it the summer it was delivered...eight years ago.
Susan loves it, too.
And so do Meg, and Carl.
I wondered about sitting outside post-dose, and even voiced a concern to Susan. She hesitated, and so did I. And then, after looking out the window and realizing that the chaise lounge was in the shade, I agreed that they could go. I kept an eye on them, and the chair, and about 30 minutes later, went out to see if they wanted anything. They declined my offer of popsicles (I was surprised, because in my mind it was such a treat -- popsicles before noon! -- but it really wasn't that warm...between the shade and the breeze from the lake, so I understood).
I noticed that the sun was starting to peek onto the chair, and we agreed that we would keep track of it.
I went back inside and started to do some work.
I was shocked when Susan and Meg came in about 10 minutes later. Susan's face was bright red -- like it has been in previous reactions -- and she said her breathing felt a little "tight."
She sat down, and started pulling her EpiPen out of her purse while Meg ran upstairs to get her lovie, Ga (a chocolate brown teddy bear that she has spent all but one night of her life with since she adopted him -- paw first -- from a giant wicker basket of similar bears on Father's Day weekend when she was ten months old) and her baby blanket.
With surprise, she said "Oh, I feel better!"
I was surprised, too, so I started checking her skin and assessing for other symptoms.
(I didn't like what I saw -- that same hivey rash we have become accustomed to over the last year.)
And then, seconds later, she said, "Oh, no, I'm not really better."
As she said it, I heard the wheezy tightness that made me absolutely certain Susan was experiencing an anaphylactic reaction.
We both knew she needed epinephrine, and we didn't even discuss who would administer it.
Susan's experience in PRROTECT has given her many things -- and while I think the clinical trial will become a stepping stone on Susan's path to true freedom from peanut, the most tangible thing her experience in the clinical trial has given her at this point is experience in self-administering her epinephrine...and with that comes the absolute certainty that she KNOWS what to do.
I knew it already, but I saw it in black and white on Tuesday, when Susan completed the last survey for the clinical trial.
She reported believing that there is a very small chance she will die if she eats something she is allergic to (the survey asked about "accidental" consumption, but I think her daily dose applies) and reported a 0% chance that she will not know what the right thing to do is if she has an anaphylactic reaction. Knowledge is power, for sure.
This morning, as Susan readied herself, preparing to self-inject her epinephrine, I did something different than I usually do. I did not sit with her, assuring and encouraging her. This time, I readied the video camera on my phone. While my hands were shaking, I was absolutely determined to mirror Susan's calm.
After Susan self-administered her epinephrine last time, she decided she wanted to make some sort of video or PSA for tweens and teenagers living with food allergies for her Girl Scout Silver Award project. She wants to share her first-hand experience in administration of epinephrine with others, believing (as do I) that what she knows has the power to save lives. And so, we had agreed that if she required epinephrine again, we would try to record her self-administering her epinephrine. (Susan says she is going to hope for 5,000 views. I think she is going to be shocked by how many people want to see what she plans to offer...)
I held my phone the wrong way, and Susan is not in focus 100% of the time...and there is a bit missing when Susan pulled her arm back (out of the frame) as she prepared to self-inject...but even with all of that, it is a pretty powerful piece of video.
Susan was incredible.
She was calm, and collected...and while I am so so ready to share her video now, this is not my project...and so it is not mine to share.
But let me just say -- Susan was incredible.
The video captures Susan mentally preparing to self-inject, self-injecting, her immediate reaction and the rapid relief she felt...and then her talking just a bit about what was going on for her.
Susan in her soft PJ pants, a t-shirt and her hair is pulled back in a scraggly bun.
IT IS SO REAL.
After, Susan was shaking...from the epinephrine...and then exhausted from the Benadryl (which she took after self-administering the epinephrine).
And I was shaking...from the adrenaline...and, frankly, exhausted from...everything.
I made contact with Dr. Bajowala.
We made a plan.
Instead of reducing Susan's peanut dose to 3000 mg of peanut (approximately 6 peanuts) tomorrow, during our scheduled visit, she asked that we reduce Susan's dose for tomorrow morning.
My husband, Paul, bought peanuts.
A whole can of them, at Costco.
The can reads: "Super Extra Large Peanuts" and carries a cross-contamination warning for dairy (thankfully, so not an issue in this cheese and yogurt loving household!).
He texted: "I can't believe I am buying peanuts."
Right there with you.
We sorted out a new (and stubborn) medical scale that SHOULD have calibrated easily but never did after the pharmacist at Walgreen's refused to weigh her dose (liability) and a Facebook plea for a medical grade scale we could borrow came up empty. (Our scale measures to .00 of a gram, so there was a bit of room for error...which we addressed.)
Carl and I played with peanut "wholes" and peanut "halves" and peanut bits. We decided it was a bit like playing Tetris (a game I am decidedly good at, fortunately). We arrived at this as the proposed dose:
(That's 2 whole peanuts, 1/2 of a peanut and a "peanut part. Really -- mind-bogglingly not a lot...)
I sent a picture of the proposed dose by text to Dr. Bajowala, explaining the limitations of our scale and initially describing the dose as 300x (x = ?) mg of peanuts. Later, a very bright Grinnellian pointed out that actually, it "could be anywhere between 3004.9 mg and 2995 mg. Probably not significant." I replied that one never knew in peanut-eating land, to which he replied it was fortunate that we had a doctor whose advice we could rely on. With gratitude for all of the doctors who are collaborating on Susan's care, I replied, "or 4!"
Susan hung out all day, reading, watching movies, playing video games.
She was in bed, asleep for the night, before 6:00 pm.
We haven't left her alone, and won't.
Once again, the cause of Susan's reaction is not known. Maybe the sun and heat, but it really wasn't very hot, and while she DID end up in the sun, it was for a very brief period of time. I don't believe this particular adverse reaction could be related to a discrepancy in dose (Reese's Peanut Butter Cups appear to be fairly uniform), to puberty or to her fledgling cycle...and other than the fact that she got braces on Thursday, there really isn't anything new.
A dear friend said it well...after we discussed the possible causes for Susan's reaction without arriving at any real answer, I reminded her that Susan has new (as of Thursday) braces. To which she replied:
"Which is such a crazy variable but I will believe anything at this point."
Which is why I am thankful beyond words that we are where we are in terms of a care plan going forward...
I don't think I will ever get to the point that I take an anaphylactic reaction in stride, but I honestly believe that I am more confident in Susan's ability to take care of herself now than I was eighteen months ago, before her first reaction the night of the food challenges that resulted in her being offered enrollment in the clinical trial.
I had a friend wonder aloud today why we would continue this course.
The answer is simple.
Because I want Susan to live a freer life.
And so does she.
And while her journey might be harder than most, isn't freedom worth fighting for?