#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

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4802992/

(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.

"First, you both go out your way and the vibe is feeling strong
And what's small turned to a friendship, a friendship turned to a bond
And that bond will never be broken, the love will never get lost"
(The love will never get lost)

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...

#29 Ortho contracture surgery for lengthening of tendon and fascia

The surgery was on September 13th, 2021.

With COVID,  a new job & a divorced single mom, blogging has been on the back burner.  The only way I can document and remember all the surgeries are to blog them.  

I am also forever grateful for the technology PicnicHealth that stores all my medical records from every healthcare portal in one location.  I am thankful to CC4C children's charity that pays for the annual subscription to the service and other medical costs not covered by insurance.  This charity is the single biggest resource we have ever been blessed by!

Now that I use PicnicHealth, the cost is a fraction of the time to request, collect, organize and develop a system of records management as well as the cost per page to request from each institution to access our own data.  For most families like ours, the cost is unattainable and most families are not willing to spend on a luxury like technology.  

This necessary technology creates peace of mind and feels like a luxury to have 13 years of complete medical records, labs, and images at my fingertips.

I am not paid by this company but I am one of their biggest fans and have seen the growth and benefits of their tech.  

OK...back to the surgery story, we are so grateful for a home health nurse, Christine Elliott.  Not only for her clinically caring for my son, but for organizing a car parade for him before his big surgery.  

He had an amazing surprise 🤯when he got home although he was a bit groggy and in pain.   

His home health nurse😇, Christine Elliott, orchestrated a surprise wonderful dream car SWAG distraction.  He & I had no idea she had dreamed this 💡up and followed it through. (please share this with those that made this happen)

The best of humanity shows up doing good without recognition.  Thank you to the anonymous strangers from all over the country who blew my mind and touched my heart for my guy.  Having this surprise sped 🏁up the healing💪🙄.  

He still has 5 more weeks of recovery from his orthopedic surgery but should be able to return to school next week.  I have also had the support from my youngest sister, Julia Hanna, to help me as he requires a 3 person transfer into his wheelchair and bed💪💪💪.

#joyrecovery

#happinessheals

#homehealthnurse

#bigboydreams

#ittakesavilliage

#protectTXfragilekids

#socialdeterminantsofhealth

#goodnews

#racecar

#ferrari

#lamborghini

#bentley

#astonmartin

#rollsroyce

#porsche

#mercedesbenz

#BMW

#Audi 

He also had his first ride in style to surgery in our friends Porsche.  Shout out to Nici Power!

Lastly, for my absence of a post for all of 2021, Hayden has been the poster child for Dell Children's Hosptial on their TV commercials, all social media and their Foundations Virtual Gala.

HERE - Dell Children's Foundation (supportdellchildrens.org)

Our time starts around 12 minutes in...

#28 Brain shunt revision

🙏update:  emergency brain surgery successful 🙏

Hayden was released from the hospital Sunday after recovering from the least invasive shunt surgical option he had.  His brain pressure is good and his headaches seem to have subsided.

Background:  Hayden has had regular MRIs of his brain and spine from the last two spine surgeries this year.  Both neurosurgeons at each surgery, as well as radiologists, had reviewed the images and said his brain shunt was fine and operable earlier this year.  We have told the neurosurgeons about his headaches and two neurologists about our concerns.  The remedy was to increase his pain meds as we thought it was part of his epilepsy.  Hayden's shunt is nearly 13 years old.  Statistically, there isn't much data on shunt life beyond 10 years so we are once again in uncharted water for longevity and lifespan of the components: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3584674/

A brain shunt can fail in three of the parts, the long tubing into the abdomen, the valve at the base of the skull or in the catheter into the brain.  Each has its own issues.  Hayden's was only replaced into his brain.  All other components were left and we hope they continue to do their work.

Timeline

Here is my account of the events that took place over the past several days

Thursday:  Got a call from our home nurse Christine that Hayden was screaming in the bathroom and that the school nurse and staff were very concerned....this has been going on for months...I then asked her to ask Hayden if he wanted to come home or stay for his holiday party.  Since he said come home, I decided to pick him up from school...like I said,  intermittent headaches coming on without any regularity with screaming lasting for several minutes to several hours and happening throughout the night.

I called our neurosurgery office and spoke with the NP who said to go to the ER as their next appointment for images wasn't until February.  Since he had vomited several nights ago in his sleep, that was our one deciding factor to go to the hospital.

I decided Hayden had suffered enough and the trauma of the ER warranted a check-up as we needed more imaging and some answers, so I drove him immediately from school to the ER of our Dell Children's' Hospital.  

After a CT scan and several x-rays, they said the ventricles had only increased slightly and that the images were inconclusive. I continually asked for more tests through nuclear imaging to see if there was a block in the shunt that was causing the issue?  I was relentless as Hayden kept screaming in pain.  The staff suggested keeping him overnight for observation.  I held firm that I would not stay overnight to the tune of $10K+ just for observation when we have home health nursing that can do the same thing.  I said unless they could guarantee that we would get a "shunt flow" study...This is were I am predicting they have me labeled as an AMA (against medical advise) difficult parent...that we would go home.

We agreed upon the shunt flow study and we were then admitted. Hayden ate a great dinner and went to sleep but woke up with more headaches on and off.  The neurosurgeon on call, had never met us, nor did he know anything about the medical complexities of the previous 27 surgeries.  To say that I was reluctant about turning my child over is an understatement when thinking about brain surgery with a stranger.  

Friday:  I called our neurosurgeon in Houston to ask if we could have a medical transport for "Continuity of Care"  due to possible unforeseen medical complexities that could arise.  He was reassuring saying that if the issue were simply the shunt, he was confident that it could be handled by most any neurosurgeon as it is the most common procedure.  He was also concerned about the length of time in transport due to his symptoms.

After the consult with Houston, the on-call neurosurgeon secured the operating room within 2 hours.  Hayden's pain was then becoming unbearable again as we waited for the surgeon and OR to be ready.  The procedure took an hour to replace. 

He stayed overnight when he woke with a fever and had to wait 24 hours before he was released.

Saturday:  I went home to be with his siblings Garrett, 7 & Hanna, 14.  They continued to pray for their brother and were very pleased that their brother was getting help from the hospital.  Medical emergencies take a toll on the whole family and especially the siblings that are left behind.  Hanna had cried thinking that Hayden was overreacting and not taking care of himself by drinking enough water.  She felt guilty for then being exhausted by his illness.  I spent some special time with my other two feeling the comfort of the Spirit telling me Hayden would be OK. 

Hayden ate and felt good all day.  

Sunday:  Released from the hospital to start his first Christmas vacation with the custody of his father.

I was overwhelmed by the supportive prayers that were offered on Hayden's behalf that got him through this difficult time.  Thank you for all of those posts on Facebook.  They were encouraging and sent positive healing energy his way.

Thursday Facebook Post:

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.”

Today was Hayden’s special 🎄celebration at school so he got all dressed up in Christmas Buccee’s gear only to go to the ER.  After nearly a 13 year life, today we are blaming Hayden’s shunt, for possibly giving him screaming unbearable/terrible headaches.

🧠💣🤯🔥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 CT scan, and several X-rays.  It's our first time here for neurosurgery since our beloved surgeon, Timothy George, passing last year.  We don't know what the reason is but we are trying to figure this unbearable headache pain out.🤯🧠💣🥊🔥🙏

🧠 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 study 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. 

#protectTXfragilekids #bucees #healthcare #neurosurgery

One Week Postoperative Spinal Fusion during COVID 19 Pandemic

As a Caregiver, I have been pushed to my limits physically and emotionally.  I have been made completely aware of my inadequacies to stop Hayden’s pain and trauma.

I do not write from the perspective of the patient enduring this trauma but hope that some day, Hayden will be able to personally journal his unique life experiences.

This blog has put me into contact with families throughout the world who have tragically not had access to healthcare.  While Hayden doesn't get to be cured of his diagnosis and endures these trials, my job is to help him find access to the best care available and work on ways to afford it.

“Justice” and “Fairness“ have always been core values of mine.  It is apparent when looking at Hayden, that his physical body does not allow him to utilize it in the same way use as the majority of people.  I seek for ways to compensate for any limitations and to find accommodations to allow him opportunities of his choice not determined by our societies limitations.  That he may choose to live life as close to the same standard as his siblings which equates to feelings of justice in this inequitable world.

My friend Tiffany recently said, “when working through an illness, it is YOUR battle.  You can feel isolated, judged and hopeless.”

The first 3 days in the ICU in the hospital were treacherous.  The care provided was outstanding, but being helpless while your baby screams and moans all night in pain was nerve-racking.  No amount of pain medicine could keep the discomfort away.

Hayden had to endure 3 blood transfusions.  His body fought hard. He lost a lot of blood.  ICU was very hard requiring every good thing that ICU offers (except no showers for caretakers).

Once bloodloss slowed down and oxygen and heart rate was not critical, we transferred out of ICU after a longer than expected stay.  On Wednesday evening, we had our first outing (to a different floor) and transfer to a chair.

Here he got to smile because he finally got out of his ICU room to the Ronald McDonald family room in the hospital, had Door Dash delivery from our wonderful friends, and got to enjoy some football.

Thursday was my first time in the chapel starting off the morning with prayer, meditation and yoga in the courtyard.  The sunrise hit the glass just right.  It was my first night getting several consecutive hours of sleep and I was grateful for the new day.

This prayer net gave me a good cleansing cry. It was beautiful.  So many precious children had been prayed over and loved it was extremely touching.

This is what enduring strength looks like.

This was the only activity he could participate in all week and he was sure looking forward to it.  He was busy with doctors and procedures and didn’t want to miss the only fun in the hospital.  He was thrilled when he was the first to win BINGO of all the patients in the hospital.  

To his surprise he also got to watch the replay of his friend, Cameron, kicking the field goal to win the Texas vs. Oklahoma game.

This picture tells the story of isolation during COVID at a children’s hospital.  Only one parent was allowed to be with the child, no visitors even including service animals and no charities giving out toys on carts to kids rooms.  Even the Ronald McDonald house wasn’t accepting families.  There is a multistory garage across the street that was just built to accommodate all of the excess visitors.

Saturday was the first day Scott was able to visit Hayden.  Friday night was the first night Hayden slept through the night.  He didn’t vomit and didn’t require pulmonary intervention.

The entire stay, Hayden asked for text messages and videos as he recovered.  When he would have moments of lucidity, he would ask that I check his iPad immediately.  I can’t remember who this was intended for, but his universal response was that he truly appreciated all the videos and jokes.

During times of crisis, kind and encouraging words, actions and prayers have been a lifeline.  Cutting out cancer isn’t just for physical illness but those that cause emotional illness as well. If your friends and family can’t be there to stand by your side throwing you life support instead of criticizing, condemning and being a part of the problem and not a solution, you know that their energy is not of our loving Creator.  Boundaries, self-respect and confidence grow as reliance on righteous judgment and intuition or inspiration speaks quietly and listening and acting becomes practice.

It is during this time that I cry out digging deep down to pull on my personal faith and spirituality seeking help in sustaining and strengthening me.

There have been many Superheros showing up in so many small and large ways.  Thank you.  You know who you are and where your heart has been.  Here a few pictures for you of some of our super heroes.

 This is my 7 year old Marvelous self-made Ironman

Hayden puked 15 times on this night nurses’watch and she requested to be assigned to us for a second night after that!?

 I didn’t even have to train this fast acting flash on any of the special ports, Mace or Mitrofanoff.  I could actually rest and work.  She worked tirelessly to make sure Hayden was comfortable after his terrible back spasm.  She is a mom and working during COVID and caring for the most vulnerable families while she has 2 littles at home.

This guy may be little but he is mighty in patience as a little brother who sacrifices so much of his mom’s attention for his older brother.

We anticipate coming home on Monday and many weeks for recovery.  It is a marathon of training and I may buy us all a medals and need some sort of finish line celebration.

Thank you!

Post Op #27 spinal fusion

It has been a rough 24 hours. The first few hours after surgery he had his pain pretty well under control.  The entire surgery lasted 8 hours from 7 past 3.  His team was extensive.  I saw a few of them rotating through the cafeteria as they were on break.

The good news is that he went from a near 90% curve to a 20% curve and balanced hips for his posture.  He has gained several inches in height and has more room for his lungs, ribs and digestion.

I love our team.  I have such confidence in them and they truly cared about Hayden and our family.

The incision looks great.  He is very swollen from his inflammatory response.  He was awake moaning and coughing all night.  He has been lying on his back and rotating with two nurses to his side.  He is on several strong pain medicines and muscle relaxers.  He will be on these a while.  They also cause him nausea. ICU is packed, loud and with constant interruptions.  Lots of little kids crying in pain.  We keep spa music on as a distraction and the suction matching to sound like rain.

Hayden had to have 2 blood transfusions as he has been loosing a notable amount of blood.  For the first time in his all of his surgeries, he has never required blood.  He went to into surgery a bit anemic at a 10.6 at 4pm and dropped to an 8.4 at 1 am. He required another transfusion of 300 ml at 6am and his hemoglobin went back up to 9.6.  He has lost 180ml of blood since then and dropped back to 8.6.  He has drainage tubes and his little body is fighting hard.  Fevers have been up and down as he fights.  He also required oxygen for the first time which he hatted. He has vomited and is fighting anesthesia/pain med nausea.

He has now been resting for a couple of hours at a time.  When he does wake up, the first thing he asks for is lets see what my messages are.  He loves them and especially the little videos and jokes.  Keep the texts coming trigghayden09@icloud.com.

I may not update everyday as I need to rest myself and have been up caring for Hayden.  Please know he appreciates the prayers and messages and especially the huge chocolate gift from Aunt Cate.  You have won the favorite aunt award by Hayden! He is so happy to share with all the people that come into his good fortune.  We will be in the ICU for a little while longer as we live moment to moment in recover.

Still the right decision with God blessing and watching over him.  The most profound statement that another friend in the hospital in Houston said yesterday was that the purpose of our children on this earth is to confound and humble the wise.

I feel humility in this process in every aspect from receiving service and depending on others when I have to rely on God’s will.