Friday, January 4, 2013

Kayli's story and introduction to our entire family

Kayli was born with Full Trisomy 18.  We were told she is "incompatible with life" and that we should terminate the pregnancy.  With the uphill battle, came medical rejection, family alienation, slow codes, futility law, and many fights to get Kayli what every baby deserves...treatments.  

When she was 4 months old, she underwent open heart surgery, to fix her ASD/VSD/PDA/double right outlet.  8 hours later, in the PICU room, Kayli came out of sedation and decided she didn't like that they closed her holes.  She fought the pacemaker, and refused all medical help.  She passed away.  32 minutes later...she came back to life!  Everyone in the room undeniably witnessed a miracle! She came back home to live with us after only 3 weeks in the hospital.  

Her first year continued to have challenges with the medical professionals.  She was denied antibiotics from a hospital when she knowingly had Bacterial Endocarditis (a heart infection) and Sepsis (an entire body, blood infection).  She outlived their stubborness, and treated her after surviving 7 weeks of infection...without antibiotics!  

At 7 months, she sustained life altering damages, when a home care nurse gave her something she was anaphylactically allergic too.  Because of her Trisomy 18 diagnosis, she again, was denied life saving treatments.  It took us 3 weeks while her throat closed to find an ENT to even evaluate/look at her!  She now has a permanent trach placed in her airway.  

At 8 months old, we decided to give Kayli a Gtube.  Our philosophy was that before Kayli's death (and rebirth), she could not stand to have anything on her face.  She went in for the Gtube surgery.  The surgeon perforated her bowel.  The resident caught the mistake, and Kayli was then opened up to repair the mistake.  Kayli continued to be toxically ill.  The surgeon refused to get our much desired GI consult.  We found out why, 3 weeks later.  The surgeon admittedly placed the Gtube in Kayli's colon instead of her stomach.  An inconceivable, and uncommon mistake.  The surgeon told us she need not explain to us why she did what she did, to our daughter.  

Kayli has had 3 other corrective GI surgeries to fix a fistula, close the colon, remove a Meckel's Divirticulum, and close an abdominal sized hernia as a result of the original surgeon's doings.  

Kayli is now thriving in life, relearning reflexes.  She knows of our love, can tell apart each of her nurses (even gives them an initiation on their first day of work), knows pain, and can communicate with us in her own way.  Kayli's spirit is much stronger than her body, and we support her in life, every way possible! 

Kayli's smile and spunky demeanor makes us laugh.  Her heart and soul have touched many lives, and she is an inspirational girl for many!  

Our Family

We are a Family of 6.  Each one of us has a challenging medical health history.  In 2009, we had 18 surgeries between myself and our 4 children.  We continue to have surgeries and find treatments for each of our medical issues.  We expect Kayli to be treated with the same integrity we are! Our kiddos each have at least one rare diagnosis, and each child has had their very own miracle! You know Kayli's history, now I will introduce you to her siblings! 

Niko is her youngest brother.  He is 6 years old.  At only 2 years old, he was diagnosed with brain stem cancer via an MRI, then a biopsy.  15 hospitals reviewed the biopsy and all agreed...He has Gangliaglioma in his Pons and Medulla (2 parts of his brain stem), and also deep in his Cerebellum.  It is a rare brain stem cancer, in that it also is in his Cerebellum.  Niko was given a 100% morbidity rate if the surgeons tried to surgically remove the large tumor.  Niko was too young for radiation, so the second step of fighting cancer was also eliminated from his care plan.  Niko was given months to live, and we were told his only hope for survival was chemo.  We anxiously waited for the slow growing cancer to get more aggressive, so the chemo would reach all the cancer cells.  After 6 months of impatiently waiting....hoping the cancer wouldn't continue growing, but also hoping it would rear it's worst so we could start treating it with miraculously STOPPED GROWING!!! Scientists can't explain it!  We can... and we thank HIM for another day with our son.  Niko still has the tumor, and the affects of it, but it STILL is not growing with any significance!  Niko is in therapies, and continues to get Brain MRIs to follow the brain tumor.  So far, God has given us more than 1,000 "extra" days with our son!!!! 

Jacob is Kayli's second youngest brother.  He is 12 years old.  Jacob has ADHD, ODD, Autism, Sensory Integration Disorder, and a rare diagnosis of EOE (Eosinophil Esophogitus).  He has a high functioning Autism, is very creative and smart, but lacks in social skills and understanding.  Jacob is mainstreamed in a Jr High school.  He loves art, R/C cars, and can conjour up a plan, draw plans out, and build his creation all in a day.  His IQ tests show him near genius! EOE is a disease where enzymes (eosinophils) are attacking his digestive system. Jacob and I went to a symposium about EOE, and we are working towards finding a treatment for him, even though there is not a cure.  EOE is typically very painful, but God has blessed him with Sensory Integration Disorder, so Jacob does not feel pain. :D  This can be a good thing, or it can be bad.  We almost lost Jacob in 2009, because his Sensory Integration Disorder (and lack of pain) hid from us that Jacob had appendicitis.  He had absolutely NO pain, nor symptoms!  By the Grace of God, we found ourselves in an ER and the dr had given him an abdominal CT scan...which found the ruptured appendix!  That was Jacob's miracle!  We continue to struggle with the day to day findings of bodily injuries.  We have had many talks about protecting him from "friends" who use his body as a joking test dummy as they try to see how far they can go with him, and see if he feels them "break" his body.  I've thought about pulling him from mainstream, but he seems to be learning more about social cues as he gets older and understands the boundaries friends should abide by for him.  :D 

Stephen is Kayli's oldest brother.  He is 20 years old.  When Stephen was 14 years old, he broke his back while swinging a bat in a baseball game.  Stephen was a great student, and equally gifted athlete!  He had his first surgery just after he turned 15.  The surgeon gave him MRSA of the spine, a staph infection resistant to antibiotics.  When they tried treating his rampant infection with the only 2 IV (most powerful) antibiotics proven to treat was then that we found he is allergic to them BOTH!!! We almost lost Stephen.  Had it not been his spine, they may have been able to amputate the infected area, but a spine cannot be surgically removed.  If they could not conjour up a treatment plan powerful enough to treat the resistant infection, he would have no chance of fighting the infection on his own, and was sure to die.  With many weeks of trial drugs on board, Stephen survived!  He has gone on to have 4 more spine surgeries, the 5th to replace a surgically misplaced screw!  In the 5th surgery, all the posterior screws and rods were taken out, he was flipped to his stomach on the operating table, arteries and his stomach were moved, and a plate was placed on the anterior side of his spine.  Stephen continues to have chronic pain, and his future holds at least one more spinal surgery, but he is a brave soul fighting the odds and is attending college.  He recently moved back home, and has transferred to a college near us since the death of our family dog at the hands of his ex roommate.  

Kayli's Dad has been fully trained to take care of ALL her needs, including (but not limited to) changing her trach, giving medications, equipment set up, and changing a diaper here and there! lol  He is awaiting spine surgery himself, because he has a bone fragment dangerously close to his spinal chord, an injury surely a result of his work as a Laborer.  

I am Kayli's mom, Kelly.  I tend to be the one who stays at the hospital with her or the boys if they are inpatient. Dad usually stays home, as we have perfected the 'divide and conquer' roles. :D  In October, we found an unusual situation, while I was in the hospital the same time Kayli was! lol We were on the same floor, but at opposite ends of the hospital!  I had a rather large (benign) mass removed from my chest.  I am an MS survivor, and have flare ups with any stress given to my body.  

If you were to see our family out in public, you probably wouldn't guess this written family to be us.  We laugh, argue, and live life with love in our hearts, just as many other families do.  You may recognize Kayli's differences because she is on oxygen and in a wheelchair, but don't for one second pity her or think "she is with them"....for it is we, who are with HER!  We walk proudly next to Kayli. We don't hide her, nor her entourage of equipment. Each family member forgets their own ailments, and puts her needs first because it is Kayli who knows more about the important things in life and the peace of death.  She leads us, as we push Kayli ahead of us when in a crowd because well, people move for a wheelchair! lol  Ok, and maybe a little because we know Kayli has such a wonderful repor with other's hearts.  We learn a lot about the souls she touches, and all the angels around her at any given moment.  Each of our children have faced their own death, and each sibling's death, but it is Kayli has died and came back from death.  It is easy to sit back, watch, and learn from her....that God does not give us what we want, but what He wants for us in this lifetime.  Kayli has taught our family that our bodies are not as strong as our spirits, and it is truly our spirits that matter beyond this life...not our bodies.  Each of our family members have disabled bodies....but that's ok, because that is allowing us to rely on, and perfect our spirituality. 

I do not wish harm on any family, but I do hope that one day you too, are Blessed with a family of disabled bodies, because it will be certain then, that you will rely on and perfect your own spirituality.  

God's Blessings unto you,
Kayli's Momma, Kelly

1 comment:

  1. Watched Kayli's video on utube tears diwn my face noses all stuffed up. You are an amazing famiky and now ti read about your kid's other medical issues, wow, how much one one person or two with your husband be expected to handle. God obviously choose you for your children and keep fighting for equal care, no surgeon or doctor should have that power to deny care. That is in God's hands not a mere human.