#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.

Spinal Fusion surgery #27

God surprises me and reminds me that we are never truly alone.  

We arrived at the OR at 5 am and he will be in surgery until possibly 3 with a large team. (we added an additional chief ortho surgeon to the crew this morning).  We also ran into another Spina Bifida family that we have known for years having the mitrofanoff procedure Hayden had years ago.  That was the single largest surgery he had ever endured with a 7-week recovery. Glad to know we will know our neighbors and have empathy in their journey.

This is Hayden’s talented surgeon that will add to his Dr. Bear 🐻  the same surgery that Hayden has.

New gowns at the hospital brought a smile.  Hayden lucked out with his favorite Spiderman!

Hayden was calm but insisted I get to go into the OR with him.  I got to see all the tools and saws but he calmly gave a thumbs up as he drifted off.

Every day is a gift.

The best gift Hayden could receive other than chocolate would be to see messages and videos directly to his iPad when he wakes up in a few days.

This pictures shows the endurance of neuromuscular scoliosis and the progress just over one year time.  My brave boy truly lives an inspiring life.  Lots of people may not like that message but he does.  Not because he uses a wheelchair but because he has purpose, dignity, kindness, hope, joy, happiness and positivity.  Don't waste your potential and health on trivial things.  What he endures is more than my worst of days. 

We are taking it day to day and should be here a week.  My wonderful mother arrived with her dog to cheer and care for my other enduring little warriors at home.

message Hayden at trigghayden09@icloud.com.

The bottom picture is if a new lift to help transport, lift and carry.  It is from a family that lost their son, Christopher, last year.  We actually have some of the same nurses now working for us.  Our families live the reality of fragile mortality and this touches my sober heart.

Surgery #26 Tethered Cord Children’s Memorial Hermann

Surgery was a success.  Hayden showed extreme courage and was the best he had ever been coming out of surgery.  I believe this is due to the prayers, good team and the desensitization from Dr. Bear getting the same surgery.  We arrived in Houston after driving in from our Spina Bifida Clinic in Austin.  We drove and arrived with our images in hand Monday night at 4:55.  We delivered all our disk with all the images through the valet. the nurses uploaded the images and had trouble with her security loading some of them.  It nearly canceled our surgery.  I had an emotional break down at that point.  Luckily there was a work around by 7 pm and the images were all uploaded.  We arrived at the hospital at 5:30 for pre op for the 8 a surgery.  Hayden and I were tired but relaxed.  

The surgery started and lasted until 11:30.  All went well and recovery began.  He laid flat on his back without any support for two days.  On the third day he began sitting up.  On the fourth day he began sitting up and got out of bed.  We were discharged on the 5th day and got to drive back to Austin.

Serendipity or Providence

Background:
Nearly 12 years ago we participated in a NIH Clinical Trial for in-utero Spina Bifida surgery at UCSF called the MOM’s Trial.  We were not selected for the randomized surgery and had after birth surgical closure. 


Next week my son will undergo surgery #26 for scar tissue of the spinal cord called, tethered cord. This is his 3rd for this particular surgery where scar tissue tethers to the nerves creating scoliosis and nerve damage to the bowel and bladder and other organs.

The surgery will not be performed by our beloved medical team captain and neurosurgeon, Dr. Timothy George. His unexpected death in 2019 was a shock.  We continue to deeply mourn the loss of our trusted 12-year relationship.  

Dr. George had been coaching and preparing us about this impending surgery.  We had been waiting for the scales to tip to where the possibility of damage outweighed the risks.  The damage is done and time for surgery is now.

It has taken exhaustive search efforts to find a new neurosurgeon for this highly risky procedure on Myelomeningocele (MMC)the most common and most severe form of spina bifida.  

It is serendipitous that we are now full circle working again with a team affiliated with The Fetal Center at Children’s Memorial Herman Hospital who were the first in the Southwestern United States to perform open fetal surgery for the repair of Spina Bifida following the published results and our participation in the Mom’s Trial.


Present Challenge:

The coordination challenge lie in the urgency of time being less than 5 business days away from surgery.  The challenge includes securing prior authorizations and insurance approvals, travel and childcare arrangements, compete several new image studies, and provide a 12-year historical medical record release for a team of new providers to review prior to surgery.

As a determined complex care coordinator, I seek and develop our individual audacious pathways to medical care. The navigational challenge has been refined over our medical tenure yet the approach continues to be with blind perseverance, and trust that my proactive preparation and faith have prepared a safety net for such a situation.

Developing a Safety Net of Adequate Insurance and Technology:

The costly initial investment of time along with a financial subscription in a start-up medical technology, Picnic Health, has proven to eliminate many burdens.  It puts patients/users in control of their health by collecting and digitizing their medical records into an easy to understand timeline.

This early investment of time and cost allows us to travel to doctors without flash drives and cases of paper records.  We also don't have to anxiously wait days or weeks to request and receive medical record releases.

Having adequate health insurance is the other vital component for receiving appropriate healthcare.  While we subscribe to both primary and secondary insurance (provided by a disability waiver Medicaid/MCO program state + federally funded), the costs associated with this surgical challenge would be insurmountable otherwise.

We are thankful that we have access to the best insurance, technology, and healthcare that allows us treatment by the best physicians improving and sustaining the quality of life.

When we turn to our faith and do all we can, we are able to do things we never dreamed were possible—or survive things we hoped we’d never have to face.

That is why my son is featured in the multinational commercial proclaiming, 

"I Can Put Up a Fight”

Education ARD IEP 8 years in Elementary Milestone

♿📚📖🎢

In the law, Congress states:

Disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society. Improving educational results for children with disabilities is an essential element of our national policy of ensuring equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities.

The vision of the Lake Travis ISD Department of Special Services is to be the model of excellence in special education by fostering partnerships that empower students to achieve individual success in a nurturing and transformative community of learners.

🎢Life of a medically fragile child has been a rollercoaster.  Hayden has been in Early Childhood Intervention (ECI) in LTISD Elementary since he was just 3 years old. He has come so very far from little to no use of his hands and very little verbal communications to thriving in his environment and completing his entire elementary education in one school.

I believe he has been treated with unanimous love and support and is the definition of educational equity, not equality.  As a parent/advocate, I have been blessed to honestly say that the teachers, staff, and administrators have had the same goal I have had for Hayden; to care for him and see him succeed to his highest potential.

Our daily road is rough.  We have never fit well within standard procedures (meant for the standard population) and we have many compensating factors that make us pursue change and adaptation which requires more time and better communication.

Navigating special education is challenging especially for parents that are already pushed to their limits by plowing through obstacles all along the road less taken on a daily basis.  It takes humility, fortitude, determination, courage, patience, and respect for those that are trying their best to serve to not see them as oppositional when there are situations that don't fit even the best-intended standards or procedures.

What I have learned and accepted is that we each may have our own ideas and a slightly different path of obtaining our goal.  It is through my confidence and respect for the team/tribe that I have been able to listen to other suggestions that I may not have considered from seasoned professionals and to feel safe to vocalize any opposing views working in collaboration to develop an educational plan that serves at a higher purpose for success.


#fape #ltisd #idea #collaborate #advocate #equity #empathy #respect