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

Surgery #25 Mitrofanoff Stoma Revision "Always Be Brave"

Mitrofanoff Stoma Revision #25 July 1, 2019 

To summarize this post, I start with blogging about the "practicing of medicine" that led to several discouraging failures.  I conclude with many examples of Trigg family gratitude.  I believe the success of our story was due to creating an ecosystem of health care that incorporated a team of doctors, staff, family members and home health providers that successfully assessed our son, Hayden, as a unique individual.  An individual treatment plan and collectively inspired situational judgment led to the best possible outcome for a complex, high-utilizer, traumatized child.

It is a crazy life when you keep a record of surgeries recorded on a blog because there are too many to count and remember. 

July 1st, after over a year of trying to decide with his urologist if the growth on Hayden's stoma was either 1) granulation tissue, 2) keloid scarring or 3) a prolapsed stoma, I admitted defeat and relented to the 25th surgery for my ten years young little boy.  Being a diligent, analytical parent,  I did what I do best when we have no examples around us.  I consulted my many medical social media groups, google researched pictures (don't recommend unless you have a strong stomach) and stayed up late nights with lots of articles read on PubMed.

The instructions for caring for a Mitrofanoff or stoma are so varied and contradictory that it can sometimes be impossible to know what to do, especially when you are new to wound treatment and you are the pioneer in your community.  While there is no one-size-fits-all approach, the following is my personal experience of my daily battle that has no ending in sight.  


Most people are very surprised when they first take a look at a stoma site.  In many cases, the site is shocking to even medical professionals.  Every nurse we have ever had, we have had to train.  Never once has a nurse trained us.  Most ER doctors have never seen anything like it and the hospital less than a mile from our house, will not see Hayden as he is too complex for their comfort level to treat him.

CC4C "Always Be Brave" bracelets for all the medical staff

Any time you cut a hole in the body, whether for an ear piercing or for a feeding tube, the body will launch a response to try to heal itself.  Hayden's an overachiever in this area.  He is a fast healer and develops scar tissue and granulation tissue rapidly. Healing is good, but too fast creates a whole host of problems.  What some may perceive as "gross" is simply the body's attempt at healing. 

Our beloved urologist, with his two decades of surgeries, had been trying to persuade me with his seasoned professional opinion, that the growth was a prolapsed stoma #3 while I argued the merits of #1 & #2 (not the #1 & #2 that you joke about in urology).  My conservative mommy gut advocated my darndest for a chance to battle this growth with all my might to save my boy from another surgery.  I wasn't totally convinced that my surgeon was wrong, but I felt I knew Hayden's body best as I had prior experience with granulation tissue as he had experienced it several times with his feeding tube.  The standard treatment for granulation tissue is silver nitrate.  The treatment looks shocking with black marks that scab all over the skin and is painful for most people but not my strong boy. 

After months of chasing my tail with diligent wound treatment and the persistent mindset of resistance to surgery, the stoma growth only continued.  Hayden's medical battles have taught me while I didn't cause them, I sure try my best to control their progression and to minimize their negative effects on his quality of life.  Many times I fail, but often I succeed in not allowing them to become emergent situations, however, never have I cured him.

After several treatments with silver nitrate proved unsuccessful, I succumbed to seek another treatment and added a dermatologist to our medical team.  The dermatologist was out of her league and like most doctors, she was intimidated with complex/acute/cute Hayden. Fortunately, she listened sympathetically and validated parental concerns. She elected to consult with our urologist to collaborate in agreement with a steroid injection treatment into his stoma.  Unfortunately, after several treatments, the plan was unsuccessful in thwarting the growth or making any noticeable reduction to reduce the size of the stoma.

This was the least invasive surgery Hayden has ever had, yet it was the one he was most frightened and anxious about receiving.

Child Life for the win desensitizing anxiety with tactile and sent distractions getting him engaged with his dreaded sedation mask.

The win came, after my persistent requests of each doctor and nurse that entered the room with granting me parental permission to hold Hayden's terrified and traumatized hand while he was wheeled into the OR until he was able to fall asleep under sedation.  Due to my trusted relationship with our surgeon and the hospital staff, their considerate accommodation allowed me to walk past the dreaded double doors and console Hayden along the way.  

Psychologically, this was the most positive surgical experience.  The built-up anxiety caused by past traumatic memory of painful, lonely, scary surgery has often led to less than desired health outcomes from the surgery itself.  For high-utilizer patients and caretakers, exceptions need to be made to reduce trauma for a lifetime of future medical experiences.  In this instance, true care for the health of the entire family including the caretakers was accomplished.

Our urologist successfully removed the growth without complication.  After medical analyzation, the biopsy concluded it was benign dense granulation tissue.  Mommy gut for the intuitive win.  The battle is not yet over, as inflammation and continued fast healing again contribute to regrowth.  Presently, I have circled back to unrelenting silver nitrate treatments until the medical world and my PubMed/clinical trial friends decide to do yet another study for us to seek participation.

Minneapolis Lite Run Clinical Trial

My personal objective has always been to give Hayden confidence in the body that God created for him. Hayden‘s body is not currently built for walking. He has hip and knee contractures, brittle bones and a dislocated hip. The purpose for us to explore the study was to see if he could get his brain/body an awareness connection. It was also to give him confidence in his ability to use and control his body independently.  This was a fantastic opportunity made possible through the many good people that orchestrated this study and our insurance for investing not only in Hayden but for new technology to benefit so many others.