Writing about my daughter’s pain and suffering is not easy by any means. Asking for help even though I am her mother whose job is to provide for her babies is excruciating, but I have no choice. This isn’t about me. It’s about my little girl, Chaya Shira, whose last remaining chances for a healthy, normal, and joyous life were cut short when she was just five days old. Born prematurely but in great condition that gave us great hope, an intern in the hospital’s neonatal intensive care unit (NICU), (where she had been getting stronger) prophylactically administered an unnecessarily powerful combination of antibiotics and diuretics that inflicted violent brain injury, profound hearing loss, and nearly killed her. She was ultimately diagnosed with profound hearing impairment and athetoid cerebral palsy which has kept her wheelchair-bound and dependent on round-the-clock nursing care all of her (thankful) 24 years. Unfortunately, while the intention of the legal system may have been to protect medically-injured patients, it actually serves as protection for the medical staff instead. Despite my valiant attempts with the help of lawyers and scientists, I was never able to pursue any legal reparations that could have provided for Shira’s medical care. From day one, her health has been maintained by my measly little pocketbook and this country’s incompetent and often cruelly negligent healthcare system. But up until June 23, 2024, Shira’s health condition was quite stable (all things considered), and her quality of life had been as wonderful as could ever be. She had been living in a sweet little nursing home in a quaint residential neighborhood where I visited her every weekend. In her wheelchair and via special transportation, she went to school and summer camp, attended all of the necessary doctor’s appointments, had friends, and even attended prom at one of the local high schools! Throughout the years, I had arranged to take her on trips to the park, ride on a boat on a lake (she loved it!), go shopping at local malls, and even go to the movies! She had the occasional cold, kidney issues from immobility, a g-tube because she couldn’t eat by mouth without the risk of choking, and required hearing aids and glasses (both of which she always had). She was happy and busy, which allowed me to finally start pursuing my own dreams of getting a college education (took 16 years, but I got my BA!). But on June 23, 2024, everything changed. By then, the pandemic and resulting lockdown were in full force, and its cruel residual effects hit home. Shira’s kidney was getting increasingly impacted with stones but her usual doctors were no longer as easily available. A brewing infection caused her to hurl but then aspirate her formula. By the time she was brought to the nearest emergency room, she was on the brink. By the time I entered that room, she lay there on that bed with barely a pulse, her long red braid hanging down to the floor as if in a Machiavellian oil painting made by the devil himself. With the presence of profound cold, I sensed the blackness of death at her feet and a bright white by her crown. After a harrowing two-month stay in the hospital, she won her battle for life by sheer will. Battered and completely worn out, she gave me her first sign of return with a smile on the one-month anniversary of having been brought into the ER, which was also her 23rd birthday! Yet despite all of Shira’s miraculous albeit slow milestones toward discharge from the hospital, I knew her life - our lives - would never be the same. As a result of the terrible strain on her lungs, Shira was now forever requiring the assistance of a ventilator to breathe. This meant that she was now not only unable to return to her nursing home of 15 years where they are not equipped to care for tracheostomy patients, but it also meant that she was now forever tied to a machine to live. Because this machine is tied to a wall and because the tracheostomy entry site into her airway is sensitive, moving her between bed and wheelchair every day becomes a risky affair that adds too much strain. So unless she has a doctor’s appointment or needs to go to the hospital, she remains tied to her bed, which makes its importance to her survival and quality of life second to only the ventilator that sustains her every breath. In its own right, being bedridden causes a cascading symptomatology whose side effects exponentially worsen in a cruel, circular fashion. One of those symptoms is a pervasive breakdown of the skin, which increases the amount, size, and depth of infectious and necrotic (dead) bed sores. Our medical system categorizes their severity into four stages after which these bed sores are termed “unstageable” as if to impart an unknowable depth to their acute condition. They are at least the size of a golf ball in both diameter and depth and filled with infectious tissue turned black from having lost all will to live. Since becoming bedridden two years ago and despite the supplements, bone broth, and collagen that I provide, Shira’s skin integrity has dwindled so much that the baclofen pump that had been surgically placed inside her belly tissues 12 years ago (to pump anti-spastic medication into her spinal column) tore straight out of her in March 2024. Even worse, Shira has been living with two horrific bedsores whose condition has not only reached “unstageable” but has also required antibiotic injections directly into their sites because of her tolerance to even the strongest antibiotics. And so, her overall condition and quality of life become one of constant cycles of pain and spasticity. The bed-sore pain increases her heart rate and raises her stress levels, which causes acute attacks of spasticity that tear at whatever skin integrity is left. The baclofen pump had at least kept the spasticity at bay, but my attempts to have another surgically placed has been met with nothing but agony from the same healthcare system that forced her into this in the first place. It is this same system that I must now fight to pay for the one bed that patients like Shira have any hope on. https://www.hillrom.com/en/products/envella-air-fluidized-therapy-bed/ Unfortunately, the only way to obtain this bed is by renting it at $139 per day. The monthly rate is $4,170 (an amount far beyond my single-mom means). Last month, when Shira’s bed sores, pain levels, spasticity, sweating, crying, and screaming became intolerable, I closed my eyes, took a huge leap of faith, and rented it on my credit card with the plan to put up a fight with Medi-Cal to finally do the right thing. Knowing this fight would take time that Shira did not have any ability to tolerate, I just did it. I dare say that most anybody would. And so, I turn to you, my dear friends, once again for help. A mother’s love knows no bounds, so I won’t stop until I find a way to keep her in this bed for as many months as possible. It vibrates by its own mechanics, which keeps her calm, and the spasticity attacks are gone! The bed is living to its full potential in gently increasing blood circulation on her skin, which has already begun to show tiny signs of actual healthy skin regeneration! She is happy, awake, and aware now that she no longer needs inordinate amounts of benzodiazepines to keep her brain from misfiring her little body into violent spastic fits. Her quality of life has sprung out of impossible depths once again! Please help me keep her in this bed for as long as possible while I figure out more funding avenues! Every $4,170 means one more month of freedom from pain and suffering; one more month of smiles, checking out cute boys on Netflix, grinning at the birds outside her windows, and being at her fullest possible potential, whatever it may be. My optimistic goal, for now, is for Shira to have at least six months on this bed ($4,170 x 6 = $25,020). Please help with whatever you can including just sharing this link. If you have any funding ideas (we are in Los Angeles, California), please shoot me a message via this fundraiser. Please help me keep her smiling! Please help me keep her on this bed! THANK YOU SO SO MUCH!!!
Artículos relacionados
