Thursday, February 22, 2024

#30th Neurosurgery with complete Brain Shunt Replacement

This almost (this weekend) 15-year-old-boy🎉 received the medical gift of life with a new full replacement of his 🎂🧠Brain Shunt🧠🎂 for his birthday present.

As Hayden is growing in autonomy, we focus on in his independence and how his story is told. 

In an effort to maintain his dignity and privacy, the details that are shared are to help educate others who may experience the same healthcare episodes as well as to educate our friends, family members, school educators and members of our healthcare community to keep a documented history of our experience.

Where Are We Now:

We are recovering at home.  

We're trying to find peace at home to sit still for a few moments, to create a quiet environment with less disruptions and distractions (constant hospital alarms for monitoring, medicine, nurses, residents, doctors, DME & pharmacy orders, staff constantly asking questions...) to praise God for his grace while privately processing the vulnerable emotions from the trauma of turning over my child for the 30th time.  

Hayden's Dr. George Bear has had most of his major surgeries right along with him.

For the past 15 years, I may have become fluent with complex medical vernacular and processes, but I have also become keenly aware of the mortal limits of even the most trained medical professionals as they balance the sacred formula of sustaining physical life.

Thank you for everyone’s urgent prayers this week as we plead and prayed for discernment.

I relish in mantras to keep me positively focused:
Perseverance over Pain
Faith over Fear
”God grant me the serenity to accept the things I can not change, the courage to change the things I can, and the wisdom to know the difference.”

Me getting to hold his hand into the OR

Hayden said his focus was on the lyrics of 
"See You Again" by Wiz Khalifa
He thinks about Dr. George and all the people who love and care about him... the lyrics are beautiful

It's been a long day without you, my friend
And I'll tell you all about it when I see you again (I'll see you again)
We've come a long way (yeah, we came a long way)
From where we began (you know we started)
Oh, I'll tell you all about it when I see you again (I'll tell you)
When I see you again

Hayden said it was a sign that this nurse was wearing Dr. George's pin on her lanyard

What Happened:

Less than 48 hours prior to the surgery, Hayden had participated in the Ascension Seton Dell Children’s marathon & 5K. 

For several months, we knew we had a ticking time bomb with the potential emergent symptoms of shunt failure.  

Ever since our October 2023 annual clinical evaluation with imaging, we learned that Hayden’s brain shunt tubing had dislodged. The scar tissue had created a channel from his shunt to relieve and release any pressure from fluid. Once this channel collapsed or dissolved he would need a replacement.  He did not have any symptoms associated with the failure. We went on to receive nuclear imaging of the shunt flow and concluded that his cerebral spinal fluid was leaking out through the dislodged lower part of the valve into his abdomen. Learning this news was traumatic and emotional.

Just over 3 years ago at Christmas in 2020, he had emergency brain surgery #28 during COVID. I was scared and felt very alone with very little support. We have both become stronger and healthier from this time and I praise God for carrying us through to where we are now.

This time around, his symptoms became emergent when he started having focal seizures. Hayden had not had a seizure prior to this shunt failure for over a year. We recognized the seizure as a possible symptom of shunt failure, puberty and exhaustion can also trigger episodes. 

He then began having multiple seizures back to back in what is called a cluster. This exhausted his little body and he slept. It was determined that he could have a team of 2 neurosurgeons, Dr. Iqbal and Dr. Tyler Cabrera along with General Surgery to help remove the remaining tubing of his 15-year-old shunt.

What Choice to Make:

He had essentially 3 options to choose in electing his brain surgery:

  • Scheduled shunt replacement at a time that is convenient and planned (He decided NO)
  • EVT a new whole to shunt the third ventricle of the brain so that he can have two paths for CSF fluid to drain in case one fails
(Published by his current neurosurgeon Dr. Tyler-Kabara)
This discussion prompted a huge trigger of emotion. This was a discussion that we had had with his neurosurgeon 15 years ago before he was born. This was a new procedure at the time and not an option. (Least effective with his anatomy and high likelihood of failure)
  • Forgo surgery until he is symptomatic and requires emergency surgery with no guarantee where we may be or what doctor would be available- (Hayden's Plan)

How did we get here:

February 19, 2024, Monday morning: Hayden woke up complaining of dizziness and headache. This is the first emergent sign of brain shunt failure. His dad who had custody on the holiday break, took him to the emergency room where he received a CT scan and showed dramatic increases in his hydrocephalus (fluid inside the ventricles of his brain).

The top dark grey is the increase in brain fluid CSF pressure compared to the 2020 and 2023 images

History of How we got to #30 Medical Team:

This is the last picture we have of Hayden‘s Guardian Angel, Dr. Timothy George. This was months before he passed away. In this last meeting, he told us about a new neurosurgeon he was bringing to his team, his friend, Dr. Tyler-Kabara.

Why does someone need a Brain Shunt:

Hayden was born with a condition called congenial hydrocephalus. It means fluid on the brain that creates pressure on the brain tissue.
He has a ventriculoperiteneal (VP)brain shunt, a long plastic catheter that was drilled into his brain and drains into his belly. We have been reluctantly awaiting this moment of eventual failure.

He has undergone a nuclear medicine shunt flow, an MRI, a CT scan, and several X-rays.🤯🧠💣🥊🔥

Here is a lesson on hydrocephalus:

The body continuously produces CSF, which is naturally circulated and absorbed. Hydrocephalus is the blockage of this cycle, leading to fluid buildup, and the most common treatment is surgically inserting a shunt, notes the National Institute of Neurological Disorders and Stroke. “This system diverts the flow of CSF from the CNS (central nervous system) to another area of the body where it can be absorbed as part of the normal circulatory process,” it notes.

A shunt is a sturdy plastic tube, but they are “imperfect devices,” notes the source, which warns a shunt can carry complications of its own. They are prone to mechanical failure, and can lead to infections and obstructions, it adds. When this occurs, further surgery may be required to repair the unit. The source explains a handful of patients benefit from an alternative surgical treatment called third ventriculostomy, involving a doctor making a small hole in the third ventricle of the brain allowing for proper drainage.

Where do we go from here:

As his parent and caregiver, it is no exaggeration that I am asked no less than a dozen times to repeat the story to his medical providers. Once it is typed up they can take the data and use it as they like. We have no medical technological ability to push this information. We simply are worn down as caregivers repeating the same stories over and over. Any developers who would like to contact me, I’m happy to partner.

If you have read this far, please also take the time and leave any comments including naming suggestions for the new shunt...

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