Grateful My Son Survived Aqueductal Stenosis Brain Surgery

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My 8-year-old son Cooper has always had what I would refer to as “tired eyes.” He would blink more at the end of the day. And his eyes would sometimes become red when he was straining over long periods of time. But it was nothing that seemed too concerning. He had complained of a few headaches here and there but we chalked those up to dehydration because he brought a nearly full water bottle home more times than not. We had his eyes checked out a few times and everything remained normal.

After Spring Break, he began complaining of needing to cover one eye in order to see things far away. What he was describing we realized was double vision. Other than that, no other symptoms. No excruciating headaches, no swelling, no nausea, or vomiting.

We have only lived here since January 1st, so imagine my surprise when I found out Cooper actually had hydrocephalus caused by Aqueductal Stenosis. 

Hydrocephalus is a dangerous condition where there is too much fluid in and around the brain. Something that he likely has had for many years (but now symptomatic) would required immediate surgery (a procedure called Endoscopic Third Ventriculostomy).

Coincidence? I think not. It is clear to me that everything about the last few weeks was supposed to happen in just this perfect way to create many magical moments, moments that we will cherish for a lifetime (while we pray we don’t have anything quite this dramatic happen in the future)!

 

I am a huge believer in expressing gratitude in every possible way.

Sometimes that gratitude is expressed privately in my heart. Sometimes it is publicly so the world hears. Being grateful for traffic reminds me to slow down and appreciate the hills that are a beautiful shade of green after months of wildfires. The broken slide at our neighborhood park reminds me to be grateful that I have the ability to do something, contact someone, have a voice, but also that my kids have a park they can walk to after dinner to freely enjoy. 

Looking back on the whirlwind of the last 2 weeks reminds me to be grateful that Cooper’s Aqueductal Stenosis wasn’t found until we were here in Orange County, with access to incredible doctors and facilities, and for every single person that played a part in getting us to the other side.

 

Thank you to our optometrist, Dr. Alpert.

For taking my son’s complaints of double vision seriously – managing to ignore his two younger siblings during the visit who were being especially special – yet somehow not scaring us with the fact that Cooper’s optic nerves were swollen and what we could be up against, such as a tumor. Thank you for referring us to an ophthalmologist and casually encouraging us to set up an “urgent” appointment.

 

Thank you to our ophthalmologist, Dr. Weiss.

For allowing us to keep our appointment 2 days later, though an hour late (darn, GPS!) and who promised my son he would do everything he could to protect his vision. With that one promise, my son walked next to me across the parking lot to the emergency room for an MRI, escorted by Dr. Weiss’s nurse, trusting that this was just one step in keeping that promise. 

 

Thank you to the ER that missed the Aqueductal Stenosis. 

Yes, you read that correctly. It was a Friday, and had they not thought it was inter-cranial hypertension but instead saw the real block in Cooper’s brain, we likely would’ve lived the weekend in misery, perhaps even in the hospital, becoming sick with worry. That “miss” allowed us to ENJOY the weekend, together as a family, knowing we were up against something but nothing scary like a tumor or brain surgery.

 

Thank you to Dr. Olaya, our neurosurgeon.

For not missing anything. For being the one to review Cooper’s MRI the next possible business day and having an extremely approachable bedside manner. For explaining everything 3x, once to me, once to my husband on speakerphone, and then a 3rd time to Cooper.

Thank you for telling Cooper.

Hearing it from you – calm, confident, collected – was exactly what this momma needed and I know it was what Cooper needed too. Thank you for having steady hands and a steady heart. For being there every day, answering our questions, checking on our boy’s recovery, and answering the same questions again. Thank you for laughing with us when we were nervously asking you pre-op if you slept well and when we were being silly in the hospital room.

Thank you for fixing my boy’s brain.

 

Thank you to OCASA, the charter school both my sons attend.

For being there for us, figuring out how we could keep Cooper safe at school and then again when we found out he was actually going to require surgery. And especially to his incredible teacher, Mrs. Norris, for allowing Cooper to explain everything  to his classmates. It was the processing he needed but also that I needed to know we were going to be okay. 

 

Thank you to the Children’s Hospital of Orange County.

For offering an incredible experience and being there for the whole family. From pre-op to post-op and even in-patient, we were met with positive energy and lots of confident and intelligent medical professionals that were clearly in their field for all the right reasons. For having an incredible child life specialist team that spoiled my boy and even better nurses that made being in the hospital for Aqueductal Stenosis almost fun.

Almost.

And especially to Dr. Tony, the infamous “Dancing Doc,” for being a bright light, wearing the handmade bow-tie Cooper  made and being something to look forward to. Cooper was able to focus on his goals and stayed excited for the moment he could have a discharge dance with you.

Aqueductal Stenosis survivor

 

Thank you to our incredible support system.

For all those in California, especially my co-workers and families at my school, that haven’t known us long but stepped up to help in every way as if they have known us forever. For my boss, who questioned nothing and created a space for me where guilt did not exist, letting me take the time I needed but also loving on my youngest who missed her momma. For my Assistant Director, that planned last minute pick ups and sleep overs as we dealt with my son’s Aqueductal Stenosis.

For all those across the country, whether family or friends, old classmates, even teachers I had as a kid, we felt ALL of you. Every single one of you, rooting for us and sending positive vibes. Thank you for sharing your love and light with us.

 

Thank you to my sweet husband.

For being my legs when I didn’t know if I could stand. For driving across town and then back again to ensure our other kids ate, and that I slept, and that Cooper was never alone. For growing and changing and being better this time than the last drama we went through and saying what I needed to hear when I was feeling weak. For letting me take the lead as I usually do in the hard times, not because you can’t or won’t, but because you know I need to be the one leading so I can remain positive about our situation. 

 

Thank you to my incredible, incredible, strong boy, Cooper.

For taking each appointment, exam, IV, MRI in stride. For being so brave and not breaking down, or worse, becoming defiant in the face of this scary situation. For not letting your darkest moments take over, when you lost your way and hope a bit and for asking for help to figure out how to push through.

For sharing your story with anyone you can and reminding the listener that,

Even the suck has good in it.

You gave every single person around you a sense of peace by focusing on the bright side and I am so grateful to have had a front seat. Thank you for choosing me to be your momma.

The very best part of life is to be able to find unexpected joy in the simplest of situations but more importantly in the hardest. Those are the true magical moments that make life worth living and allow me to be grateful for all life has to offer. Cooper is right, even the suck has good in it. And I am so grateful we have found so much good in this suck and turned it into magic.

family of Aqueductal Stenosis survivor

 

If you are interested in helping the incredible nurses and doctors that helped Cooper with his Aqueductal Stenosis and so many other children in way more difficult and long-terms situations, you can help support their mission by participating in the 2019 CHOC Walk. Here are 5 MORE reasons why you should join us!

 

Aqueductal Stenosis

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Erin is a fresh transplant to Orange County from Richmond, VA as of January 1, 2019! She and her husband, Rick, married in 2008 on the same beach where they fell in love on Virginia's Eastern Shore. They are thrilled to have settled into the Laguna Niguel area with their three wild children, ages 8, 6 and 2 and less than 5 miles from the coast. Erin works full-time as the director of a preschool, where she has the opportunity to make an impact and encourage the future of tomorrow to grow in every way, all while having fun! A self-proclaimed eternal optimist, she and her family enjoy living life and turning everything into an adventure. She loves trips to Target (alone at 8 am), iced coffee, baking, cheering for her VCU Rams, staying healthy, fresh air and introducing her kids to real music. Keep up with Erin on Instagram @therealricelife