There are a growing number of visual images and sensory memories I carry around with me in my head -- I think of them as "clinical trial snapshots." And yet, they are so much more than "snapshots." They are moments in time that are indelibly etched in my mind, in my heart. While there are a growing number of such moments, there are two that truly stand apart from the others -- and they both involve the administration of an Epi-Pen.
The first one is from the of Susan's intake food challenge -- the night
when she self-administered (not once, but
twice), her Epi-Pen while I sat next to her, urging her on, offering to
help, to hold her hand, to hold HER.
Susan drew a deep breath before injecting herself with her Epi-Pen the
first time, and stabbed the Epi-Pen into her right
thigh. She immediately gasped and pulled
it out, way, way too fast for the life-saving medication to enter her
blood-stream. Susan looked at me, realization dawning, and tried to jab
the Epi-Pen back into her thigh, but the protective shield prevented her from
doing so. As she looked at me, I looked back at her calmly, hoping my
fear and racing heart did not show. I gave her another Epi-Pen, saying
that we had "plenty" and that she could just "do it
again."
By that point, blood was streaming down Susan's leg -- and as she
wiped at it with a tissue, I felt fear grabbing at my heart -- I wasn't sure we
had time, and I didn't want to take the opportunity from Susan, but, I also did
not want our goal of her self-injecting to put her at risk. I sat next to
Susan, watching her -- seeing a mixture of fear, uncertainty and resolve on her
beautiful face. And yet, precious seconds were ticking away...
I took a deep breath and said firmly, "Susan, if you are
going to do it, you have to do it NOW." She looked back at me,
uncertainly. I offered to hold her, to hold her hand, to help her...and
she replied, "No, I need to do this myself." And she did.
Incredibly, she did -- injecting herself, counting slowly, slowly to ten -- and
then massaging her thigh. Perfectly...or so I thought at the time.
Those wasted precious seconds...as Susan gathered the courage to
inject herself not once but twice...could have had a terrible, devastating (unthinkable) result.
While
I have always understood that time is of the essence when epinephrine is
required, I did not really understand that every
second counted until relatively recently.
And I feel that the import of those seconds is underscored by another moment
in time that is indelibly etched in my memory...and this particular one has
been making its way to the forefront of my mind more and more often
recently.
While I wrote about it at the time that it happened, I did not write about it in detail. I simply wrote, "Susan bravely assisted the doctor in administering an Epi-Pen...and within minutes, she was much better...but exhausted. We made her stay awake, talking to us, until we were certain the Epi-Pen had truly stopped the reaction."
(At the time, it seemed like an accurate enough accounting of what
happened.)
But, with the passage of time, and reflection juxtaposed against recent
media stories about children whose Epi-Pens were available and about parents
and/or medical providers who "held off" administering epinephrine in
the hope that Benadryl "would do it," I have decided I need to write
more fully about what happened in the seconds before Susan assisted the doctor
in administering her Epi-Pen.
While Susan and I had talked about the importance of her taking
any opportunity that might arise to self-administer her Epi-Pen, I had not
reviewed that idea with her the morning of her rapid desensitization to peanut
(looking back, I'm not sure why I didn't...but I am glad in some ways of this
oversight, because of how things unfolded...)
The day of Susan's first rapid desensitization to peanut was
difficult. She showed mild signs of a
reaction early in the dosing process and the symptoms increased and escalated
as the doses mounted. After Susan
experienced some blood pressure changes, skin changes (read: hives), and (eventually) increasing abdominal
discomfort, the doctors decided to administer Benadryl intravenously.
As Susan's reaction progressed, she began vomiting with a force
and violence that I now associate with food allergies. At that point, she had had a cumulative total
of approximately 180.5 (approximately because while she had consumed a .5 mg
dose, a 1 mg dose, a 2 mg dose, a 4 mg dose, an 8 mg dose, a 15 mg dose, a 30
mg dose and a 60 mg dose, she only consumed part of half of the 120 mg dose) mg of peanut protein.
After she stopped vomiting, Susan complained that she was feeling like something was
"stuck" in her throat, the doctor moved quickly to pull out the
Epi-Pen. Seeing what was happening, and
recognizing the need for epinephrine, I started talking to Susan about
self-administering. Susan agreed to
self-administer, and the nurse handed the Epi-Pen to Susan who
then...hesitated.
For
a split second.
The doctor urged Susan on and again -- she hesitated...but only for a split second. Really -- time stood still, and yet even at
the time I knew Susan's hesitation to be brief.
With urgency, the doctor said very firmly, "We are going to
do it together. Now." And so, Susan assisted the doctor in
administration of the epinephrine.
As I have reflected on this (again and again and again, as the
imagery, the senses, the memory plays relentlessly and without invitation in my
mind), I have realized that even though I knew Susan was having a multi-system
reaction to the peanut doses, I was not alarmed by her split-second
hesitancy. I felt like we had time. Let
me be clear -- I did not think we had much time, but, I felt like we had (enough) time.
I
have come to understand that the doctor did not think we had time.
And I believe she was right.
By
the time you see symptoms that clearly indicate your child is in danger, there
may not be enough time.
DO
NOT hesitate. If you are even wondering
if your child needs epinephrine, administer it.
We
hear and read far more about those who hesitated and have lived to regret it
than those who administered epinephrine quickly and with confidence.
Every second counts -- even
when it seems like time is standing still.
Especially
when it seems like time is standing still, for it most certainly is not.
Do not hesitate because your child could not possibly be having
an anaphylactic reaction.
Do not hesitate because your child's throat only feels "a
little funny."
Do not hesitate because your child has never received epinephrine
before.
Do not hesitate because you/your child is afraid the injection
will hurt.
Do not hesitate because you do not want to have to go to the ER.
Do not hesitate because you are hoping Benadryl will "do the
job."
Do
not hesitate for any reason.
Do not hesitate because you fear
you have failed your child. Those of
us who are parents of children with life-threatening food allergies spend our
lives trying to forge a safe path for our children. And yet, we make mistakes...and our children
develop new allergies (our daughter required epinephrine three times the summer
she developed her soy allergy).
Know, as you administer the epinephrine, or support your child as
he or she finds their independence -- it
is not your fault...if a food is mislabeled or cross-contaminated...or you
misread or misunderstood a label...and in the seconds that really count, none of that matters.
If your child is having an anaphylactic reaction, do not worry
about the hows and whys behind it -- while it is crucial to try to understand
the cause behind every single food allergy reaction, all of that can wait until
your child is safe.
I do not think I could live with myself if I sat holding
life-saving medication for a second (or two, or three) too long. That some parents have
to live with that knowledge horrifies me, and I am thankful beyond words
that many of them have found incredible strength and openly share their stories.
Every
second counts -- even when it seems like time is standing still.
This post made my heart race, my stomach turn, and my palms sweat.
ReplyDeleteThe thing that parents of food allergic children have to teach our kids is to LIVE. Add all the other parenting things on top of that - the most important thing to impart on our kids is to LIVE. Not in the greeting card - wind blowing through the fields and hair way - that's all fine and good - but to really LIVE.
Jab it in NOW and LIVE!
As a teenager with food allergies, I thing it's great that she got those opportunities to self-administer. It's scary for you, and possibly dangerous for her, but it's less dangerous than sending her off alone, where she might hesitate until it's too late, without practice and the confidence to be able to do it herself.
ReplyDeleteWe have never had to use epinephrine. However, I think about it all the time of course. My mental hesitancy is what happens to them if you inject it but they didn't need it? Is there any adverse side effects if they were not really having anaphylactic shock? I believe I would not hesitate. I feel like I am good in a crisis. But...that is my only concern. Do you know the answer to that?
ReplyDeleteYou probably kbow that the body naturaly produces some epinephrine. This mesns that it takes a lot of it to actually hurt someone. An EpiPen or two, even if unnecessary, is completely safe. Temporary side effects may include nausea and a racing heart, but that's a whole lot better than anaphylaxis.
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