Another scar another story to tell. Only it wasn’t your
decision, it was mine.
I hate that medical parents have to make such intense
decisions for their children. This isn’t picking out pink or purple equipment.
This is putting my daughter under anesthesia for yet another surgery and implanting a pacemaker like device. Making the choice for Olivia and the enormous
weight that carries can be hard to bear. We’ve already had to judge whether the
Vigabatrin medication benefits to treat her infantile spasms causing severe
brain damage outweighed the risk of her losing what little vision she had. Dan
and I literally had to sign off on the administration at the hospital. Once that
didn’t work, then came the option of ACTH injection shots. Our poor baby hit
just about every single side effect that was mentioned. Having to administer daily
shots to my 5-month-old baby in her thighs should’ve never been on my mommy to
do list. Later came the endoscopy and a g-tube surgery. Then the big one in
July of 2022, having to choose ECMO (life support) to save Olivia’s life.
Before that day, I never realized the process entailed a surgery. It’s 2
cannulas (tubes) that go into a vein and an artery to pump blood outside of the
body to a heart-lung machine. The machine removes carbon dioxide and sends
oxygen-rich blood back to the body. This lets blood go around the heart and
lungs, allowing the heart and lungs to rest and heal. In the moment it felt
like a no brainer because the only other option was death. I wasn’t sure if
hope was helpful or if it was just denial back then, but I couldn’t allow
myself to believe hope would be impossible.
Two and a half years later, I still find myself looking at
the scar daily on the right side of her neck. Although it’s healed, the
emotional scar I was left to tend to seems to get torn open each time I see it.
I never asked Olivia how she felt. This ever-growing invasion list doesn’t even
include the numerous times we’ve had to hold her down for lab draws or x-rays
as she squirms for help. Do you know how many times I’ve had to remind myself
that this isn’t betrayal, I’m doing what’s in her best interest? So, when I say
Olivia has another surgery coming up, please know it is just as tough as the
first. She will sustain another 2 scars because of the decision I made. But if there
is any chance at all that can better her survival rate and/or quality of life,
I must take it. This VNS surgery means a medical device is implanted into her left
chest wall just above her beating heart. The thin narrow leads from that device
will be connected to the vagus nerve on the left side of her slender neck. It will
send off electrical pulses/stimulation to help stop seizures once they are
sensed. While this doesn’t cure epilepsy, it can help lessen the number of seizures
and/or severity of them. There is thought that this can help prevent SUDEP
(sudden unexpected death in epilepsy), something Olivia is at high risk for. The
pressure of decision making is not fair and it’s not light by any means for
medical parents.
But when I get to witness the benefits and I see your bright
sunflower smile, it’s the reassurance I need to know it’s all worth it. No
matter the decision, I will always be by your side.