Monday, February 3, 2025

Every Scar Has A Story

 




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.



#HopeForOlivia

  HUSTLE FOR HOPE 5K - WASHINGTON WAY  April is HIE awareness month, and this year was our sixth Hustle for Hope 5K that we participated in....