It was a tremendous task to get him to the recommended hospital. I had the doctors in Dallas arrange to have him on a life flight as soon as possible. The only step required was to get his discharge papers.
His nephrologist fought me, tooth and nail, every step of the way. I was all packed up and ready to go, when she walked into his room and told me that she was refusing to release him. If we were to bring him to Children’s, I would have to sign an AMA (Against Medical Advice) form, releasing her and the hospital from all liability if he were to pass away en route. She threatened that if I were to set on foot off the floor with Koby, she would get me for neglect and child endangerment, and the state would take him into custody.
She had called the MediVac personnel and canceled his flight. She brought in a social worker from Child Protective Services and an armed police officer to deter me from leaving. We had to find a way out as his life depended on it.
Later that evening, I was pulling Koby around the pediatric floor in his little red wagon when I caught a glimpse of my childhood pediatrician. He had been promoted to be the Head of Pediatrics.
I frantically called to him down a long corridor and he stopped in his tracks. As we walked toward each other, I broke down. I could barely get my words out when he asked me, “What’s the matter, Angela?”
I finally choked down my emotions and explained the situation. He personally escorted us to his office where he made the arrangements to get us up to Children’s as quickly as possible. He signed our discharge papers, and promised he would remedy the situation with Koby’s nephrologist.
After being admitted to Children’s, Koby’s health drastically improved. The morning after we arrived, he had a biopsy on his stomach that revealed a severe milk protein allergy—something I had pleaded with his previous doctors to appraise since we had a familial history of this same sort. He was placed on several different medications, including the maintenance drug, placed on a strict milk free diet and switched to soy-based formula.
Within the first week of our stay, Koby had gained four pounds, the vomiting episodes were completely gone, and he was fighting his way to a second chance. I knew he was getting better, but my thoughts still centered on what his future held.
Within these seven months of hospitalization, though, I began looking around and witnessing the children with fates far worse than my own child’s—babies having open heart surgery at one-day-old, the sweetest little two year olds with terminal cancer, babies dying in utero, babies dying shortly after birth. It was then that I turned my eyes to Heaven and thanked God for making our trial far less difficult to endure. At least we knew there was hope.
Even though Koby’s fate is unknown, I’m extremely thankful that Koby has a chance, that he can live out his childhood as far as the Lord allows him into adulthood, praying daily that they find a cure.
His kidneys will eventually shut down completely and he’ll need a transplant. The transplant will cure the kidney disease, and prevent him from having to take seventeen medications every six hours, along with two subcutaneous injections once daily. He’ll just have to take anti-rejection medications and the maintenance medication for the blood/metabolic disorder that caused the kidney disease in the first place.
He is above average mentally, making straight A’s in school. The only way one can tell that he’s sick is by knowing his age (nine) and seeing that he’s the size of a three-year-old.
He is my hero and my inspiration for all that I am and ever will be in life. I guess one true test of parenthood is having to watch your flesh and blood suffer through all the surgeries, needle sticks, and endless episodes of unbearable pain, feeling helpless, overwhelmed, and wanting to stomp every doctor or nurse who walks into his hospital room saying, “We need to draw more labs,” or “We need to do another procedure on your baby.”
Lately, though, it has become routine to him ... it doesn’t even phase him going to the doctor, even though he knows he’ll have to get his blood drawn, or knows that he might have to stay in the hospital without warning. He just struts into the doctor’s office, head held high like he owns the place, holds out his arm and tells them ... “Okay, this vein is the one the gives the most blood ... give it your best shot!” Kids are so resilient!
After experiencing all this, I seem to have more patience, a more “happy go lucky” approach to life’s little mishaps, and a newfound respect for the blessings so graciously bestowed upon me.
He has taught me to view the world like a child sees a rainbow for the first time—awed by its majestic beauty, intrigued with its passionate variety of colors, and thankful that there is hope after a storm.
Koby is just taking life as he knows it (this life is all he’s ever known). With his head held high and his feet on the ground, he keeps reaching for the stars as he makes his remarkable journey toward life, HAPPILY EVER AFTER!
It is up to us as individuals to decide whether to turn these type of circumstances into grief-stricken, maddening experiences, throwing blame to God and rationalizing hate as our only option, or to utilize our fate to inspire others, humble ourselves, and make the world a better place. I choose the latter! If the world was perfect and people were flawless, then who would we be and what kind of existence would that be? Before we truly realize who we are, we have to first be at rock bottom ... looking up. Only then will we be humble enough to exemplify patience, love, compassion, and understanding to all those who come into our lives and truly be gratified for having turned our trials into a gracious glory.
(Part 1) | Part 2 | (Part 3)