By the evening of March 4, 2015 Kelptyn was admitted to the hospital, some medication adjustments were made and he was discharged in a few days. He was in/out of the hospital 5 times since and when he was not inpatient we were constantly trying to manage his varying degrees of discomfort around the clock. I cannot begin to express the uncertainty in the symptoms Kelptyn presented. He would be in intense, excruciating pain for hours and then rebound to a tolerable pain level, enough to function (eat, walk, talk, sing, play). The nights were filled with painful, sleepless hours as we tried to chase his pain, but he would rally long enough during the day to manage a few short hours at school here and there. He loved school and would not complain of his pain to his teachers. However, on several days when picking him up from school he would tell me about his discomfort the second he took my hand. I kept him home from school often when he had more intense pain and needed more monitoring. Then when his pain was not manageable at the house we took him back to the hospital on Tuesday, May 19th for what would be his final stay and days with us.
Nearly all of Kelptyn's surface veins had been used up over the years and his final two IV/PICC lines were placed in deep veins using ultrasound. We adjusted medications, then moved him to the ICU, and gave him emergent drugs. On Friday, May 22nd when his body was not responding to the medications as it had all the times before and there were no surgical solutions, we began to shift our prayers for Kelptyn's deliverance from his tortured body.
Those last few days were filled with some tough talks that no parent ever imagines having with a child. Yet some how in the moments we spoke to Kelptyn of his final plan, he seemed to be still and calm long enough to listen. For weeks, he had asked me "Why?" and I finally told him I knew why. I told him that his spirit was given a very special body, the body of a saint, one that had to fight really hard, one that he needed to rest and let go, so that his spirit could go marching in with the saints in heaven. I told him that all his rage, thirst, hunger, bruises, pokes, "noodles", medicine, and headaches were all temporary ( just as I had always told him). All of these things were temporary and would pass because they were not forever. I told him all these things would be "all done" pretty soon and his spirit would get to go "bye bye home forever". And just after midnight on May 25, 2015 surrounded by his Dada, Mama, and Baby Brother....Kelptyn did just that. He went marching in.
Although Kelptyn was considered blind by our human standards, I have always believed he had superior vision beyond our world because to me he never stopped looking at the angels. He was an extraordinary being that always seemed greater than an ordinary existence. Challenge after challenge Kelptyn would rise above and carry on. He would rally through some incredible pain and still manage to be happy with whatever he could in every moment. Although his suffering was more than most of us will encounter across our lifetime, he was the most obedient and joyful child I have ever known.
Wherever Kelptyn went whether it was the store, library, church, school, hospital, park, beach, or restaurants people would watch him in awe. They would comment and smile. Walking with Kelptyn sometimes felt like we were walking with someone who was famous and not just because he was in a local movie, in the newspaper, or on the radio once.....but because he was so unique and rare. People always seemed to remember the cute, little, red head with the cane. He was never taller than a 2T, but he was always above the clouds as he walked singing like no one was watching and most of the time we were lucky enough to hold his hand.
He began his human journey with us as a surprise on a starry night. After watching stars fall from the sky late one night, I said I caught one in my belly and thus began our Happy Star's story. Kelptyn Jack took both his first and final breaths just after midnight about 4 years and 4 months apart. His human experience was rare, remarkable, and divine, start to finish. We witnessed miracles and he taught us many lessons including how to find joy every day and how to suffer gracefully. I could fill a novel with the lessons he taught us big & small and the kindness he brought to this world and our lives. Being called his "Mama" was one of my life's greatest blessings, it was an honor, a privilege, and a gift to have been in his presence.
Kelptyn's Beads of Courage
Below is a list of some of Kelptyn's courageous acts (he got beads for some of these things):
*34 whole blood transfusions
*11 platelet transfusions
*29 hospital stays, totaling 324 days (not including hospital clinic day visits)
*too many needle pokes, digging, and IVs to count
*a sleep study as a breastfed infant
*18 echo heart exams
*3 EKGs
*2 Bear hearing exams
*4 bone x-ray skeletal surveys
*10 brain/skull surgeries (4 of them shunt revisions)
*15 MRIs
*24 CT scans
*too many bone, lung, head x-rays to count
*2 PICC lines (2 repairs)
*PICC line infection
*Various chemotherapy
*Loads of medications
*Weight gainer
*2 Broviac lines
*Mickey button
*Swallow/GI test
*NPO orders for a total of 50 days
*3 urine catheters
*IVIG infusions every 4-6 weeks for about 3 years
*electrolyte infusions
*nose bleeds
*bloody vomit
*excessive "Seismic Blast" diarrhea
*Drug highs
*Drug withdrawls
*2 Bone Marrow Transplants
*TPN (IV nutrition) for about 8 weeks
*broken arm at 7 months old
*mucus and awful mouth sores
*ICP
*crazy GVHD rashes all over his body
*skin biopsy
*fevers
*isolation
*1 Donor Lymphocyte Infusion
*Insomnia
*Blisters
*Perpetual thirst and no drinking allowed while on certain ICU drugs
*Crainoplasty Expansion with Jackscrews
*Jackscrews stretched skin in his head 4 months and formed a bursa under the screws
*Skull bone biopsy
*Port line in and then out 7 months later
*7 months of 2-3 times daily injections of blood thinners and GCSF
*Ballooning, declotting in CathLab 4 times
*GI scope
*Pulled 8 teeth and reshaped dental bone
*Gums that remained open and a fistula on his left side
Although his suffering was great,
Kelptyn was greater,
and he showed us it was all worth fighting for.
thebravelittlesoul.pdf |