ONE IMPATIENT DECISION

Has created immense pain and suffering; emotionally, physically, and financially. Not only once, but twice. My name is Melinda, I want to share with you the story of Cello; my Grandson; an incredibly brave and strong little boy whose life and future have been FOREVER altered by another’s impatient decision.

 
I'll NEVER FORGET THE MORNING OF OCTOBER 29, 2013

I was driving my youngest daughter (who was not involved in the car wreck) home from the doctors. I looked to my left while stopped at a red light and gasped- there had been a horrific accident; and I prayed all was okay.

The SUV involved in the accident was so mangled that I didn't even recognize that it was my very own daughter’s, Alicia. She was 28 weeks pregnant with Cello. In the vehicle was my daughter Alicia, her Fiancé (Tyler), and her 2 1/2 year old son (Tallon) whom angels were watching over as their vehicle was catapulted into the air simultaneously flipping and forcefully impacting with the ground, the vehicle then rolled twice hitting a concrete light post that abruptly stopped the car. The impact forced the light post to break in half and it came crashing through the back of the vehicle, a near miss from smashing my grandson, Tallon, in his car seat.
An impatient driver made a U-Turn into oncoming traffic, which collided with my daughter’s vehicle causing this horrific traffic accident. This traffic accident forced my pregnant daughter, Alicia, to be rushed by ambulance to the hospital. She began to hemorrhage as she suffered a placenta abruption. Her baby NEEDED to be delivered immediately; but he wasn't. This unfortunate accident has brought our family into the depths of the unknown and the beginning of a nightmare. While Cello was in the NICU (Neonatal Intensive Care Unit), anger, grief, sadness, pain, exhaustion, and tears ensued (we never cried so much in our lives). Finally, however, we are beginning to see HAPPINESS and HOPE...

 
BIRTH FROM AN EMERGENCY CESAREAN
Cello's tiny little body was literally fighting for his very existence. They desperately worked at resuscitating his almost lifeless 2.7lb body...finally a solid heartbeat; he's put on life support.

He is so fragile, his skin transparent with fingers and toes that looked like Q-tips, so tiny. Although he would open his mouth; you wouldn't hear a sound; he couldn't cry because the life support was breathing air for him and the feeding tube was through his tiny nose.  You can see above that his father's hand could cover his entire body.

His first diaper was literally comparable to the size of a cell phone; and yet was still TOO BIG for his tiny body.  His blood pressure cup on his ankle could fit as a ring for a grown man.  Alicia and Tyler could not hold their baby for a few weeks. It wasn't safe for Cello to be outside of the protection of the incubator's warmth and exposed to germs; but their love flowed through to their child through the hand holes of the incubator as they gently caressed his delicate hand as his mother sang to him.  You can see how tiny he is...

Day 14... Cello finally had a brain scan because he was losing blood as they kept doing blood transfusions (approximately 7 blood transfusions in his short life).
The Doctors told Alicia and Tyler that Cello has stage 3 & stage 4 brain bleeds.... that's where the blood went and put pressure on his brain causing damage in the white matter in his cognitive and motors skills area.  
Cello now had Cerebral Palsy Spastic Quadriplegia- the consequences of the brain bleeds putting pressure on his brain and damaging the motor and cognitive skill areas of his brain.

The NICU doctor that originally was handling Cello's medical care said he would be "a vegetable" while simultaneously making physical gestures of such.  He told us that Cello WOULD NOT see, hear, walk, talk, and would require a permanent shunt in his brain and a feeding tube. We were told that he would not have a life; that he would merely exist. The doctor was trying to convince my daughter and her fiancé into making a decision to pull life support from Cello. We were devastated but convinced that Cello deserved to live.
Cello was a very sick baby; he was born 3 months early and he still had much growth and development to just "catch up" to where he would of been on his regular due date of January 21st.


PLANNING A FUNERAL
The decisions are overwhelming for Alicia and Tyler at such young ages of 22 and 19, the agony that wretched their very souls; they were not alone. Why? How? What do we feel?  What do we do?  I can't let him go- but I can't selfishly let him suffer for a lifetime- OUR CREATOR- HELP US! We're on our KNEES- begging for mercy for Cello, help him, heal him; don't let him suffer anymore! 

The emotions came as domino effect that pierced through the entire family like a waterfall extending; far beyond those hospital doors and the technology that kept these precious lives; through the entire family; emotionally, physically, and financially.  I desperately wanted to see Cello, Alicia, and Tyler.  I had Shingles and Post Herpetic Neuralgia- I could NOT selfishly risk those babies lives any more than they already are.  

We wanted to scream- the rollercoaster ride that we could not stop.   As my daughter's mother I had to be prepared and strong for my daughter with the possibility of the worst, as losing Cello loomed over us daily.  I had never dealt with the details of a funeral and to have that horrific burden placed on my daughter to prepare for the worst would have been emotionally devastating.  But it WAS a potential reality that could NOT BE IGNORED.  I had to notify our Ceremonial Chief that the family may need them and we were then on standby prepared to leave for Oklahoma on a moments notice should Cello pass. It was an EXTREMELY DIFFICULT emotional thing to do but I had to for my daughter, as she would have not been in any condition to make any arrangements. 

The drummer/singer, the Fire keeper, and my second to oldest Son, Ryan; whom recently returned from two tours in Afghanistan; had without hesitation said he would be Cello's Guardsman should that dreadful day come; and my oldest Son, Brandon offered to help Ryan. I was extremely proud of my oldest Son's as that is a difficult responsibility.   

The Guardsman sit at the head of the loved one that passes and NEVER LEAVES THEM UNATTENDED from the time of passing until the burial ceremony on the 4th day before noon.  

The Fire Keeper has the responsibility of building a sacred fire; again from the time of passing until the burial ceremony on the 4th day before noon.  Like the Guardsman, they can NEVER leave the fire unattended.


CELLO PULLS THROUGH…
Cello had to have heart surgery the week of Thanksgiving. How THANKFUL we were-such a strong tiny guy! I'm pleased to say that you can barely see his scar now from surgery. Again to help you realize how tiny Cello was- the incision was only maybe 3-4"; but that covered his entire body from his tummy up through his shoulder blade. The surgeon did an excellent job!

AND A PRICELESS GIFT.... CELLO IN A CHRISTMAS STOCKING!!!!


…BUT CELLO ENDURES MORE AT THE HOSPITAL
Alicia and Tyler went to visit Cello and they seen his hand black and blue and demanded an x-ray and the doctors confirmed that the staff FRACTURED /BROKE Cello's finger while taking blood! Sadly, nobody could hear Cello crying while it was happening because of his life support tubing.

Then the staff failed to properly check on him another night they went to visit Cello and his pulse oximeter cord was wrapped so tightly around his tiny little thigh that it cut off the circulation so bad that his leg was swollen and they could see the bone through his skin. If it had been on his leg much longer Cello could have lost his leg!


There were other occasions my daughter found him in compromising conditions.
Alicia and Tyler wanted  to stay with Cello at all times and they demanded quality care.   Unfortunately, some of the staff began referring to my daughter as “crazy” for her demand of quality care for her son. This poor baby has been through so much in his short life that we don’t expect him to endure more suffering due to the lack of attention and care of the hospital staff. In spite of the poor quality Cello received, his NICU bill still managed to climb over $1.5 million at this point.

After these incidents, we were blessed to have a couple of wonderful nurses that took over for us on Cello's primary nursing care. They TRULY loved Cello as we do and we are extremely grateful to them for watching over our little angel.

 APRIL 4, 2014 HOMECOMING DAY!  
So much JOY! HAPPINESS! Cello had to have a machine for several months.  At first we were really scared because he was still healing from all that he had endured in the five months since his premature birth. 
Big brother Tallon FINALLY got to meet his little brother Cello after over 5 months of waiting


And the HAPPINESS CONTINUED... Cello received his wheelchair- he can now sit up because his upper body is secured and can now participate in the family’s daily walks and he can move around the house. He is so happy to have it! Cello is full of so much love- NOTHING BUT LOVE, you can feel it when you hold him or play with him. It's truly humbling given everything he has endured to always be a happy baby- always a smile for everyone!

 

ANOTHER SCARE

Cello had swelling on top of his head and his neurosurgeon had to do pressure monitoring to see if Cello required a permanent shunt! It scared us to death and made us sick to our stomach that Cello had to endure yet ANOTHER painful experience. They had to drill into his skull to place a temporary shunt to monitor his pressure in his ventricles. He had 13 stitches.  


AMAZING.... SUCH A TROOPER! Cello is laughing and giggling the day of the surgery. The outcome was PERFECT- he did NOT require a permanent shunt! SO MUCH RELIEF!



WHY GO FUND ME
As the future is daily unfolding we face the unknown; continuously searching for the answers to the dozens of questions we have. What do we do?  How do we help Cello achieve the quality of life that he deserves; the quality of life that others are afforded? How can we help him learn, move, play, and communicate? How can we best protect and provide? Where do we find salvation and relief from the ongoing stress and worries of meeting these needs? 

Unfortunately, the auto insurance from the accident didn't even scratch the surface. It was just enough for my daughter to purchase a used car (which ultimately broke down within the year) and to pay deposits/rent/utilities for several months in advance because, unfortunately, my daughter was unable to return to work in response to the tragedy.

Of course we have contacted numerous organizations and agencies in search of assistance and relief; many of which are well known and even those that aren’t. Unfortunately, the common theme has been to provide us only with written or online information or books that you need to purchase, but mostly we were only provided numbers to other agencies that provided yet more number's to other agencies- or they say they are out of funds for the time being and consequently, we have yet to find the assistance and support we seek.

We have gone to several big churches to request assistance. However, in almost every instance, the assistance we requested (even though not always financial in nature, but important to Cello’s welfare nonetheless, such as faxing medical records for Social Security Disability that were critical and time sensitive) has been declined for various reasons.

Cello’s NaNa, PaPa, and extended family have been amazing and help as much as they can. However, assistance is limited as they have their own difficulties with illnesses, lost of loved ones, and other responsibilities.

Our deepest GRATITUDE for every caring person no matter what the donation is. PLEASE know that you can help greatly by making a financial contribution and/or help spread Cello’s story by sharing our "Go Fund Me link" with your social networks; LinkedIn, Facebook, Twitter, etc. Our family will be absolutely blessed.

We have already taken the lead in developing a TRUST with Bank of America / Merrill-Lynch. We intend on the donations made here being funneled through said Trust. This Trust comes with it anti-abuse measures and we hope it brings you satisfaction and peace of mind knowing that EVERY SINGLE DONATION will ONLY be used for the enhancement of Cello’s quality of life.


CELLO’S NEEDS AND HOW YOU CAN HELP
Our primary goal is to ensure Cello has a meaningful and wonderful quality of life that affords security, independence, and dignity. This will be accomplished through the integration of a comprehensive “LIFE PLAN” that incorporates diagnosis, abilities, needs, resources, financial, and legal planning into a complete and practical plan of action; this plan is continuously addressed and changed as the abilities and needs change.  It is an ongoing process as Cello progresses through different stages of life. Below is a brief explanation of what we immediately know is involved for us to appropriately plan for Cello. Again, all donations made here will be funneled into the Trust set up for Cello and the expenses of the items listed below will be paid for with Cello’s Trust Fund that is made possible by your donations.

1. LIFE PLANNING

Cello would greatly benefit from a Certified Life Planner; the range of cost per hour is $80-$150 and the final expense can be $30k or more. But it is crucial for Alicia and Tyler to know what possibilities they are facing and what his needs will approximately be throughout his ENTIRE life. A Life Plan addresses Cello’s; physical, mental, psychological needs, personal protection, support system of family, friends, and spiritual needs, home, job, and independence to the extent of his capabilities.

A Life Plan includes:

Resource Planning: Identifies the necessities for a quality life such as healthcare, personal care, supervision, therapies, service management, and assistance with daily living to include adaptive equipment & assistive technologies.

Financial Planning: How the resources will be accessed and paid for. The estimate will determine what necessary income, resources, and insurances are needed. The Financial Planning will address the adequacy of health, dental, permanent life with Trust beneficiary, disability, and long-term care insurance.

Legal Planning: Protecting Cello and ensuring that the plans made by his parents, Alicia and Tyler, are implemented as intended. Essential legal documents include wills, trust agreements, power of attorneys, and healthcare directives.

2. HOUSING

Cello is in need of larger housing with larger hallways and a larger main bathroom so he may be able to move about the house freely in his wheelchair as well as be able to accommodate the use and storage of his entire special needs equipment. His current housing situation does not afford him this opportunity nor does it allow his parents to make special modifications needed for Cello’s general use. The housing goal is to accommodate Cello’s lifetime needs, as it will be HIS house via the Trust.



3. TRANSPORTATION

As I briefly mentioned earlier Cello’s parents are without transportation due to the traffic accident. Cello needs a reliable wheel chair accessible vehicle that is large enough to accommodate his equipment so he can safely travel to and from his doctor and therapy appointments and participate in general family activities that require transportation.

4. PHYSICAL THERAPY

Cello requires various types of therapies on a daily basis as per his physician recommendations such as massage therapy (for stiffness and tightness), physical therapy, aquatic therapy, occupational therapy (fine motor skills), speech therapy, social therapy, feeding therapy (when he gets excited, or randomly, he tenses up which consequently leads to swallowing before chewing which leads to choking), play therapy (group interaction with other kids and assistive technologies), music therapy, sensory integration therapy, recreational therapy, and soon, Hippotherapy.  Unfortunately, we do not have the resources to accommodate these at the moment.

Cello's Stander to teach Weight Baring


5. SPECIAL EQUIPMENT AND ASSISTIVE TECHNOLOGIES

Nearly all of the physician recommended therapies listed above require special equipment and assistive technologies that Cello does not have. Cello would greatly benefit by having a Gait Trainer (a modified walker that encourages early cognitive and learning development, spatial awareness, head control, and teaches him how to take individual steps), Body braces (to prevent deformities), Adaptive Tricycle, Augmentative Alternative Communication (AAC) devices, Mechanical Lift, Specialized Car Seat, Specialized Crib, to name just a few of the special equipment and assistive technology devices that will improve Cello’s quality of life and accessibility.

Below is my daughter and her family.  As I said in the beginning, not only once an impatient decision has devestated our family; but twice.  The next page of my grandson Cello's Campaign is about my auto accident a little over a year after theirs and how it has futher compounded the emotional, physical and financial pain and suffering. 

 Alicia & Tyler

CELLO (left-braced by big brother) Tallon (M)  Takotah (R)

Baby brother Oakley